The Table

Feeling a Bit Better

2012-02-01T20:25:00.000-06:00

Feeling Lame Update:

As you may have read in my previous post, yesterday, I was a hot mess. I'm not skipping along merrily just yet today, but I did manage to get some sleep last night. Although my back is still hurting quite a bit, and I had more bloody nose mess in the morning, I did not have any more bleeding for the rest of the day (amazingly), and I did not have asthma issues at work today.

I may be headed for better days soon. I've been making a real effort to eat healthier and have been managing to get A's in Calorie Camp because of it, so hopefully that effort is helping something to go right. Not sure what made it go so wrong yesterday, but such is the life of a fibromite - always unpredictable. Oh, bonus: I lost 3 pounds as of my weigh in this morning. Yay me!

I'm going to continue hoping for better days now. Thanks for reading. I hope you are having a good day.

Feeling Lame

2012-01-31T16:36:00.002-06:00

Sorry to be the bearer of bad news, yet again, but despite my best efforts, my sleep has been ridiculously scant and superficial for the past month, even when I use the new ear plugs. I still like them for tuning out the noise, but apparently noise is not the only trigger that wakes me.

For instance, the other night, I slept and dreamt, but woke up suddenly in the middle - well, at the apparent sudden END, I guess - of each dream, for no apparent reason. No noise, no gasping for air, no falling or startle dream, nothing. One second, in a creative story of my mind, next minute wide, fucking awake. This must have happened about a hundred times that night.

Each night is different, too. Last night, for instance, I don't remember dreaming, but I slept for a few hours before my brain decided I shouldn't sleep for the rest of the night. I woke up around 3am and finally got up after 4am to address some of the things popping into my mind. I'm tired as all hell at the moment. In fact, I left work early today because I couldn't function. It's unseasonably warm today (60 degrees F for January in Chicagoland is very unusual) and that may or may not have anything to do with the fact that today my asthma has been the worst it's been in months, that I can recall. I have been coughing and trying to breathe for hours, then noticed I was feeling faint, probably from the lack of oxygen getting to my brain.

On top of that my face flushed up and felt like it was burning up (this is still about a daily occurrence) AND my nose started bleeding, right there in the office (another daily occurrence). It was too much and I was starting to sense microsleeps occurring due to my sleep deficit. I carefully drove home and I'm about to try and nap some of this crap away. Savella is already making my heart beat way too fast and hard (100+ beats per minute at rest is not normal) but the rescue inhaler also makes me shakey and screw it up even more.

In addition to the above, my lower back is having spasms for the past few days, despite my increased muscle relaxants, stretching, and a great massage treatment just yesterday. However, the pain from that pales next to the nerve pain jolts I've been getting in the back of my right thigh for the past several days. It's maddeningly sudden and severe every time. It makes me jump and/or gasp involuntarily, and I'm pretty good and not bringing attention to my pains in front of others. I've been calling this sciatica, but really I don't know what it is. I've been told my piriformis muscle is likely impinging on it, so I stretch when it occurs, to try to prevent further jolts. It's difficult to say whether anything helps this - as it's so intermittent. I get a similar pain in my forearm as well, and that's been acting up lately, too.

I wanted to write this all down while I'm feeling it so I can give my future self an accurate description of what went on today. This is about all I can handle at the moment. Stay tuned for an update of how great I'm feeling later (hopefully). I will have better days. I will have better days. I will have better days...

I Don't Mind the Snormy Nights Anymore

2012-01-08T18:07:00.003-06:00

The last few weeks have been interesting for me. Don and I took the last two weeks of the year off work. The first week, we traveled to Michigan for a short beercation, visiting Dark Horse, Arcadia Ales, and Three Floyds in Indiana, while on the way back to Illinois. It was a great time, but I started having some trouble sleeping.

The week after that, I caught some sort of mild cold and continued to have increasingly more difficulty getting and staying asleep each night.

Just this week, a day after returning to work, I came down with some sort of stomach virus that had me weak, in pain, and exhausted from being awake for several hours each night.

What's worse, Don is a snorer. There is a running joke at our house that, whenever I hear him snoring a lot during the previous night, the next day I complain that last night was very "snormy".

He seems to sleep pretty well, despite his snoring, but I certainly don't, especially when flare ups or other things are keeping me awake. As a fibromite, I am never fully rested, even if I manage to stay asleep all night, as there is something in my body that is unbalanced and prevents me from reaching the deepest stages of sleep. It is a common symptom of Fibromyalgia and I definitely suffer from it.

The worst part of Don's snoring, as I realized while listening to and studied the sound for many hours on end very recently, is that it's not a nice, rhythmic pattern of sound that I can get used to hearing and still drift off to sleep despite the volume. Rather, the sounds vary in type, volume, and timing. At times, I'd manage to drift into that pre-sleep stage, only to be startled back awake by that all too familiar chainsaw in the bed, next to me. I must admit, there were times when I felt so frustrated I almost wanted to smother him with my pillow... but I didn't. I cannot punish him for something he cannot help or even realize he is doing. He's sound asleep, dreaming. He might as well get a good night's rest, even if I can't.

Anyway, in the mornings, after Don was up for work, I mentioned my lack of sleep and my frustration with the snorminess. He wanted to help, but wasn't sure what he could do. He even offered to try those BreatheRight nasal strips that are supposed to help reduce snoring, but he has his own health problems and I didn't want to hurt his fragile skin with the adhesive. I asked for ear plugs.

My little foam ear plugs, after several uses

Since I saw Breakfast at Tiffany's a couple weeks ago and saw Holly's fancy little tasseled ear plugs, I wondered if I should be sleeping with ear plugs, too. Not tasseled ones, of course - I'd never be able to sleep comfortably with those. But I knew we had foam ear plugs in the house, because we have gone target shooting and have proper ear protection for that activity. So, Don dug them up for me and I tried them several nights ago, for the first time (for sleep).

The nice thing about these ear plugs is that they are like memory foam: they are small, and soft. You roll the little cylinders into skinny little things that you can quickly cram into your ears, then they expand back as much as they can to fill your ear canal and block as much sound as they can. They don't block it all - in fact, I can still hear the snores through them, but they definitely dampen a lot of the noise, so it's a lot easier to ignore. They also block out all those little bump-in-the-night noises that can wake a light sleeper.

When I first put them in, I get to hear the ringing in my head a bit louder for a while, but I seem to get used to it soon enough and then drift off to slumber pretty easily. I have used them now for three nights and I have slept WELL for a change! I only remember waking up maybe once each night, to turn over and get comfortable. I fell back asleep quickly and slept until a reasonable morning hour. These little things have made a huge difference in my ability to sleep, stay asleep, and all the cascading symptoms that occur when I don't get enough z's.

If you're a light sleeper who gets awakened by any little noise or slight disturbance during the night, or if you are lucky enough to have a snoring bed mate and it's affecting your sleep, these are cheap and comfortable and worth a try. Of course, if you have someone who depends on you to wake up at night, like a baby or other dependent, you may not want to reduce your chances of hearing them, but otherwise, go for it!

Here is a quick start to finding some foam ear plugs online, but you can probably find at least one brand at your local general store as well. The larger packs might be better worth the price or/and shipping, since I'm sure they can only be reused so many times before they break down and get nasty from ear wax and sweat and stuff. Invest in a few.

I hope this helps someone out there. I wish I'd tried this earlier!

Those Tight Fibro Muscles

2011-12-13T17:23:00.000-06:00

I came across this About.com article about how to keep fibro muscles loose, which can be a challenge. Just thought I'd share it here for you all to read and comment about it.

http://chronicfatigue.about.com/b/2011/12/02/loosening-up-your-muscles-with-fibromyalgia.htm

I've been very stiff lately, and have been having lots of symptoms all at once. I will need to see if I can vary my routine a bit to make a difference.

Changing Vision with Fibromyalgia

2011-11-28T14:44:00.001-06:00

The last time I had my vision exam, I got a new contact lens prescription and a new, light-framed set of glasses - after two failed trials at varying prescriptions. It took several weeks, two pairs of trial contact lenses, and a pair of completed glasses before I realized that the originally ordered prescriptions were not going to work well for me. Am I a freak? I don't know, for sure, but here's what I do know...

I get my vision checked every year, at least, because I am near-sighted (myopic) and need to see clearly to drive, use a computer, watch television, or see things in general. I've been myopic since early high school. My vision is not awful, but the awful part is that it's inconsistent from day to day, or even hour to hour. During the past few days, I've noticed that my vision is uncomfortable while working on the computer in the mornings, after I install my contact lenses or put my glasses on. It feels distractingly off right now, as I am trying to focus on my computer screen while writing this post, even though morning hours are long gone for the day.

I usually opt for the contact lenses vs. glasses on any given day, because I prefer to have nothing on my face (pressure can cause headaches and skin irritation for me, thus the ultra lightweight glasses I paid extra for). I also prefer the fully focused field of vision that I get with contacts. Glasses have gotten smaller over the years and I find that I have to move my head more to look around when I have glasses on, because I can't focus on the edges very well, like when I descend stairs and look down at my feet. (For those of use with Fibromyalgia or other chronic pain or fragility issues, being careful on the stairs is no joke!) It can be a bit more of a bother, but I still wanted an updated set of spectacles for days when my eyes don't want contact lenses in them, or if I want to rest my eyes or read or do close up work that doesn't require correction.

I know that my vision, though imperfect, was very stable before I was rear-ended and sustained the concussion that seems to have developed into myofascial pain and fibromyalgia within a year and a half. The first odd thing that happened with my vision right after the concussion was that my myopia improved by a whole number! I found out when my vision was so awful with my existing contact lenses on that I went to see the eye doctor. The optometrist that had been treating me for a decade was rather surprised to see this change, as even he hadn't seen anything like it in his career. He did, however, offer the hypothesis that the muscles around my eyes were changing the shape of my eyes, thus my vision, due to the trauma. This would also explain the pain I was having in my eyes when simply looking up or in any direction with my eyes. (The pain is much better now, but it seems the vision is still changing at will.)

I take a muscle relaxant at least twice a day, every day, to try to help combat the constant myofascial pain, muscle tension, and spasms that occur in my entire body. For whatever reasons, my muscles may feel better or worse at any given time, so I assume that they can be changing my vision just as unpredictably and that is what I'm experiencing.

However, there are other considerations, such as:

the medications I take and any visual side effects they may be causing (I distinctly remember having an episode of double vision while on Lyrica, and that was just with one eye),
migraines (I get those crazy auras sometimes and they really mess with my vision),
that concussion I had in 2006 and possible long-term effects that may be affecting the vision portion of my brain (among other areas),
the sleep dysfunction that comes with fibromyalgia and its own visual effects,
the intensity and "flavor" of pain I may be having at any given moment (which can cause tension to escalate while the stress response in the body increases involuntarily),
any other physical or emotional stress I may be experiencing (stress response), and
my age (I'm pushing 40).

I have learned to expect that my body will act up in odd ways without my permission or without warning. This is just one of those things that I have had to accept: sometimes I can see fine, other times I feel like I'm wearing someone else's contacts or glasses and struggle to do certain things.

Are any other fibromites out there dealing with visual changes like mine? Please comment. I'd like to know if this symptom is as rare as my optometrist would have me believe.

Losing Weight with Calorie Count and Calorie Camp

2011-11-14T18:54:00.001-06:00

Fed up with my tight pants and unflattering photos like this one,

Me and my gut on last July's Beercation

I decided to get back on my Calorie Count account a few weeks ago to keep track of what I'm eating. I thought having a food log would also come in handy in doing detective work for my recent IBS symptoms, especially since I've been learning about FODMAPs in foods and which ones may be affecting me.

I discovered there is a Calorie Count mobile application available, which is handy for logging foods on the go. After logging a suggestion via the mobile app to request a sharing feature on the app, I received a developer reply from the site about a beta version of the non-mobile site, called "Calorie Camp" and was given a link to get on and start using it and testing. It's a way to share a day's report of foods and activities with others on the site (your buddies). We support each other with comments and earn badges for doing things right. I like it a lot! Until now, I've basically been going it alone, with the exception of letting Don know about my goals. Having a peanut gallery of people cheering me on online seems to make a difference for me.

I've been on and off Calorie Count for years since discovering it and creating my account, but it's always been a bit of a chore to count calories. I would lose a little, then wing it, then go "oh yeah, Calorie Count" and get back on again. With Calorie Camp, I actually find that I want to log, share, and comment with my buddies online. I want to earn those dumb little badges. I also like seeing my nutritional analysis (it's very detailed) and striving to choose healthier foods based on the nutrients I seem to lack. Most of all, I really like the fact that being aware of what I put into my mouth has caused me to maintain a proper level of calories (on average) to actually lose a couple pounds since I've started up again recently. I want to weigh myself!

This is my favorite thing to look at on the entire site - my own, personal Weight Log graph:

Keep in mind that this graph represent a whole year's worth of time, so the net loss over a year is not too impressive to most people (less than 10 lbs thus far), but I just love the slope anyway. It's encouraging and empowering. I made this happen!

That top weight pushing 160 on the left scared me into resetting my Calorie Count goals again last year. I set things up and left my goals intact for many months while kind of being cognizant of my need to shed some weight but not really logging regularly. Then, last July, I went on Beercation in Wisconsin with my husband and apparently overindulged quite a bit over that week or so. (See that double spike over Jul 2011?) I had a great time, but I came back looking kind of like a potato sack. (See first photo above.)

The plateau at the bottom right of that little mountain is about where I started up on Calorie Camp beta. Except for the final upturn from today's weigh-in (I went to a party last weekend and nibbled a bit too much), I've been losing weight, nice and slow, the way I'm supposed to. The green, dashed line is the trend line, which ignores the minor blips in the blue line of my actual weigh-in actual data. I'm hoping I can continue with the downward slope. I have a long way to go yet, but at least it's downhill now and the slope is getting steeper.

If you're already on Calorie Count or want to sign up for your own account, feel free to be my buddy. If you're interested in beta testing Calorie Camp, especially if you like giving technical feedback, Igor is the guy you want to contact. Here is the forum about Calorie Camp.

One last thing. My IBS flare up has finally calmed down in the past few days. I'm hoping the FODMAP research and diligence has been a factor. It's a theory that finally makes sense to me and seems to be making a positive impact on how I feel.

Best Bra for Preventing Pressure Hives

2011-11-01T20:02:00.002-05:00

In the last several years, my body has become sensitive in myriad ways. Among the latest is the fact that my skin becomes itchy and breaks out in hives if pressure is applied for more than a few minutes in a single area. This is called Delayed Pressure Urticaria or DPU.

I first noticed this new problem after kneeling in the garden to weed out the non-natives one afternoon. I was wearing cushioned kneepads the entire time, but the next day, while attempting to kneel down indoors to do something quick, I noticed pain and sensitivity on my knees. When I looked, I saw that they were still marked with red circles on the pressure points. Touching the circles confirmed they were ultra-sensitive, even a full day after the kneeling activity.

As you can imagine, any tight clothing will leave similarly painful, red areas on my skin for hours after removing it. I have had to stop wearing any uncomfortable shoes I owned after an incident at a party where I wore my shoes for a couple hours, then had to do some walking (a couple blocks to a train station) to get back home. I could not effectively walk without excruciating pain for the entire next day and my feet were still very tender for days afterwards - a whole week, if I remember correctly. They felt like they'd been burned in fire. All my high heels are either gone or on their way out while I try to replace them with Dansko or comparably (expensive) quality shoes for problem feet like mine. Even socks with too tight a top elastic band are out for me. I've seen argyle patterns on my legs after a day's wearing. It's a bit ridiculous, actually. I take my clothes off and I look almost like I've still got clothes on, per the marks on my body that remain for hours.

Another problem with daily living is wearing a bra. I'm rather small-breasted anyway but because of the discomfort, I have been opting for tank tops this summer or loose tops to try to get away with skipping the painful boobie conTRAPtionS, but there have been times when I just couldn't go without. Time and time again, I found myself cursing the thing by evening time, throwing it in anger only too late after the itchy hives had made their appearance. The worst areas seemed to be the side straps, though I was marked with red lines just about everywhere the bra touched my skin.

Recently, a certain brand of bra was recommended to me and I became interested in finding something better. I tried that brand and wasn't too impressed, but fortunately for me, I had decided to check it out at the mall and made the most of my trip by stopping into another store to look around. I was also thinking it was time to re-evaluate my size, since I'd been in the same size for over a decade now, and the DPU made me wonder if it was unnecessarily tight on me anyway.

I took a careful look around at about 30 different styles of bras at the mall's JCPenney department store, looking mainly for inside stitching and fabric that might be smoother and more comfortable than most bras. By some miracle, I had actually found what I was looking for! There was a display of colorful bras by Maidenform called "Pressure Free" that had a cool, smooth fabric specifically on the side straps and no zigzag stitching on the inside to irritate me. I grabbed a few sizes and tried them on, plus a few other brands I'd seen, just in case they felt better than I expected.

The winner, hands down was this Maidenform bra and I would recommend it to anyone having a hard time with bras irritating her skin. (Turns out a slightly larger size fit me more comfortably, too.) They were not cheap at $35 each, but JCP always has sales and this time they had a buy-one-get-one-half-off sale, plus I had a discount coupon for $10 off my purchase to help me offset the cost. I committed to two in my new size and gave them the full test drive for a few days before deciding whether or not to "marry" this brand.

After several wearings, my only irritation at the end of a full day's work was the rectangular little patch on the back hook closure part. By habit, I was using the loosest hook option and something was just itching and scratching my skin on my back. I was sad that this might be as good as it gets for me, but I tried the next set of hooks and that problem was completely cured so I'm all set and thrilled to pieces! Now I can wear bras again and be a proper lady. Okay, well at least I can wear bras. ;)

Now that I knew my new size and had done a confident test drive, I shopped in earnest for a good deal on this same bra so I could replace my old collection. I settled on the online store called "Bare Necessities" and used my Ebates account to get a percentage back in cash (I love Ebates!) and bought enough to get free shipping.

One more thing: The colors are a little non-standard, but they do have beige, white, red (with some pinkish trim for some reason), navy (sorry, no black) and a black/gray animal print. Don't know why they decided on this set of colors but they could have done worse, I suppose. Perhaps if they sell better, they might add more colors to the selection.

I sure hope this helps someone out there. Feel free to let me know how this works out for you. I'd love some good news.

P.S. I'm in no way connected to any of these brands or profit from any mention of them except that I have an Ebates account and wouldn't mind a referral bonus. However, if you don't use my link, I'll still be happy if you find a bra that helps you as much as it helps me. My advice is free because I care about objectivity. That's why I don't advertise on my blog.

What makes you laugh?

2011-10-23T09:49:00.001-05:00

Dumb, silly moments will, though I cannot explain why, sometimes send me into a giggle fit that recurs for hours.

What's on your mind? Fun or serious questions welcome.

Hip and Low Back Pain Flare Up

2011-10-16T19:19:00.001-05:00

For the past month or so, I've been experiencing an increase in pain daily pain in my left hip and lower back up. The pain started up before my last visit (late August) to the Fibromyalgia specialist I see regularly. I remember indicating that the sacroiliitis in my left hip seemed to be acting up since the previous appointment with him, and may be contributing to other pains in my left side, up my back and down my leg and into my foot, depending on the day. I'd also been having daily attacks of sciatic pain, which favors the back of my right thigh. The doctor had asked me if I was interested in doing some tests to investigate these issues, and at the time, I quickly remembered how all my tests seem to come back negative no matter how crappy I feel. (Such is the life of a fibromite. Test results come back "normal" for almost everything that is checked.) I thought about the liklihood that nothing would be found while I'd have to schedule and endure the tests, and decided not to bother.

Just about the next day or so after that appointment, I'd begun to regret my decision to forgo hip testing. I had started to experience new, disturbing pain attacks in my lower back, near and above the left hip. I would notice them while working diligently, usually late afternoons. I was always sitting in my office chair in the office when these attacks wold come on and they could not be ignored. These are the kind of sudden, intensely painful moments that can make you jump a bit or even shriek from the surprise. The first one, I figured, was an odd moment that would pass after some time and allow me to continue living life in the new normal level of pain I've come to expect. Fibromyalgia is highly unpredictable and I have come to expect strange, painful surprises as part of the diagnosis. However, the attacks started forming a daily, troubling pattern. After a few days of this same kind of agonizing attacks, I started to wonder if something new was breaking in my body. I called my doctor's office and explained that I was hoping to take the doctor up on the offer for getting some testing done on my hip. I expected a call back from the office the next day or so, after the message was relayed to my doctor, but I hadn't heard back in weeks. I ended up calling back again when a few weeks had passed and the pain was still occurring, and evolving into a constant ache in between attacks. I don't know what happened, but the doctor called me back himself after this call and discussed my pain and concerns with me, to try to determine what kind of test might be most effective. We settled on a couple of MRI studies of my sacroiliac and hip, which I promptly scheduled with my local hospital.

After finally getting those MRIs done of my hips just last Wednesday, I have received the results, which (drum roll, please) came back "normal" (other than the presence of my uterine fibroid, which I already knew about).

The interesting thing now is that I'm confused about the diagnosis of sacroiliitis. The doctor who ordered these last MRIs for me (at my request) is the same one who diagnosed sacroiliitis in my left hip. He made the diagnosis based on my symptoms and physical examinations. Now I don't know if these MRIs show that I don't have sacroiliitis, or that I never did. I will be discussing these tests with my doctor in just a few days, during my next regular appointment. Hopefully, he'll be able to help me understand what is really happening in my hips and give me some kind of advice on how to help alleviate it, or at least reduce it.

By coincidence, the muscle relaxant that I'd been taking twice a day (sometimes thrice a day) for a long time now, to help with my Myofascial Pain problems, had suddenly become back-ordered by the pharmaceutical manufacturer, for no specified reason and for an indefinite amount of time. That alone was odd, but because of this issue, my refill was switched to a different brand of muscle relaxant to substitute. I was not happy about that, as my body is sensitive to drug changes and who knows what side effects might result from this change? I was apprehensive, but given the circumstances, accepted the change and have been taking the new brand since late September. The pill design is quite awful, but I figured it would do just as good a job as my previous brand nonetheless. I'd done some research about the effectiveness and came to the same conclusions my doctor probably did - they are very similar drugs and should work in essentially the same way.

The reason I mention all this in this same post is that I started to wonder if maybe the new muscle relaxant might be contributing to my new back pain problems. Perhaps it's insufficient for my body's needs. Perhaps my body is going through an adjustment period. I've been very consistently hurting a lot more in the lower back area for the past few weeks now, not just the left side. I have more trouble bending and straightening back up, and I have more difficulty trying to get comfortable in any position now.

After looking at my notes, though, and discovering the timing of these events, I cannot conclusively determine any sort of relationship between this medication change (let's not forget I switched to Savella last July and that was quite the ordeal!) and the onset of this new, odd, back/hip pain stuff going on. Although, now that I've thought about it, there is still the possibility that the Savella switch could have been some sort of trigger to this new problem. I have been sleeping a lot better since the Savella settled in, so I assumed it was a change for the better from Pristiq. However, SNRIs like these meds don't just affect one or two things in the body - they affect things even scientists don't yet understand.

I'm lost right now and full of questions. This new back pain could have to do with a change in seasons, or just be part of the randomly nonsensical changes that happen with Fibromyalgia. I don't know. I don't know if my doctor will know. I don't know if anyone knows. All I know right now is that I'm in pain and I need to stop typing and get up for a bit. I may need to strengthen some of my core muscles. It's not easy to strengthen muscles with health conditions that can discourage exertion with pain and exhaustion that can stem from a molecular level, in the mitochondria.

I will do my best to remain active as I can and keep living life to the best of my ability, despite these ever-changing health challenges.

Fall Photos 2011

2011-10-09T18:02:00.000-05:00

Yesterday, I spent some time outside, playing with my camera, during what will probably be the last nice weekend of this year.

October in Bartlett, IL is when leaves turn glorious colors and fall off the trees en masse.

Click here to enjoy my photos of Fall in Native Suburbia 2011!

Where would you like to spend your retirement?

2011-10-03T18:05:00.001-05:00

If financially and medically possible, I would love to retire at my current home, in "Native Suburbia". http://www.icode6.net/native_suburbia/

What's on your mind? Fun or serious questions welcome.

Drugs: Loaded for the Week

2011-09-30T09:12:00.002-05:00

Benia's Weekly Pills

I just loaded up my weekly pill organizers for another seven days. Here's a lovely photo of all the pills I'll be taking in the next week.

The white box is for morning pills and the blue box is for bedtime pills. Pretty crazy, eh? There are both medications and supplements in here. This picture doesn't even include the inhaler, nasal spray, eye gel or cream I use daily.

My body requires a lot of maintenance, as the basic functions are not working as they should. I have always been the type of person who would avoid taking medicines if possible, and let my body's natural back-up systems do their work. As a kid with allergies, I almost never took anything for them - just tried to avoid the triggers and always have tissues on hand. As I became a teen, I developed asthma and the inhaler became a necessary part of life.

With myofascial pain and fibromyalgia dragging me down in my adulthood now, the need to assist my body's defective functions with medications has culminated into this weekly regimen of pills, along with other treatments and habits not pictured.

Such is the life of a fibromite...

Foods Affecting IBS - FODMAP

2011-09-25T19:19:00.003-05:00

As you may already know, Irritable Bowel Syndrome (IBS) is one of the many coexisting conditions that I experience as part of Fibromyalgia.

My understanding of IBS has always been that when a person experiences seemingly random bouts of abdominal cramping, diarrhea, and/or constipation and other digestive maladies, and no medical reason can be found for these symptoms, the diagnosis is IBS, meaning that person's digestive tract is basically stamped as being "fussy" for whatever, unknown reason. Treatment usually focuses on addresses whichever symptoms are most bothersome, though there is no cure for the condition.

Since Fibromyalgia seems to make our bodies very sensitive to the world in many ways, it seems logical that the coexisting conditions and symptoms that tend to come with the FMS package have a lot to do with sensitivities. We are extremely sensitive to pain or stimuli that should not even evoke pain in normal people, such as touch. Our bodies are sensitive to activities, as we are easily fatigued. Certain sounds, sights, and smells can cause us pain and trigger migraines or flare-ups. Many of us have allergies and various other sensitivities to temperature, airborne particles, and foods.

I have many allergies, including some that affect my nose (allergic rhinitis), some that affect my breathing (allergic asthma), some that affect my skin (dermatitis, dermatographism, delayed pressure urticaria and various other hives triggering conditions), and some that affect my digestive tract (food allergies and oral allergy syndrome([OAS]). My food-related sensitivities seem to have started only in the last few years. Among them is a mild apple allergy that was confirmed after OAS symptoms began to get progressively worse after each apple I'd eat. Since birch pollen allergy is associated with being sensitive to apples, I checked the OAS list associated with birch pollen again, recently, when I noticed that eating a handful of almonds seems to have given me some sudden digestive distress. It turns out almonds are indeed included in some OAS lists for birch pollen, but I feared that drinking almond milk with my cereal most workdays for breakfast may have caused a new, legitimate food allergy. I'm not thrilled about the possibility of having to avoid another food due to allergies, especially since nuts seem to touch a lot more food than apples do. This is the part where I start to wonder if I'll keep adding new food allergies until I eventually can't eat anything without histamines flooding my system and making me miserable.

Well, during my recent research on OAS and foods that can cause problems for people, I came across an article that discussed new studies being done on IBS being linked to foods with a high FODMAPs. I'd never heard of this term before, but learned that it has to do with fructose and the types of sugars contained within the foods. These characteristics have been grouped to help determine which foods might trouble a sensitive digestive tract, especially as the quantities eaten from the wrong category (high FODMAP rating) get higher. Apples seem to be at the top of "bad" list, even though lists vary according to the publishing source, because of their high level of fructose. However, not all fruits are high in fructose, as bananas seem consistently on the "good" list. I find this new categorization of foods to be interesting and worth observing.

Do a search on the term FODMAP to find the exact definition of the term and the criteria used to categorize foods as having high, low, or questionable levels of the troubling substances. I'm no expert on this, but I do remember noting that foods with lots of fructose (vs. glucose) can be troubling in the gut because fructose must be digested in the large intestines, rather late in the digestive tract. The reason that late digestion is troubling is that it allows food to ferment and cause gas and other digestive problems. There's a lot more to it, of course, and talking to a dietitian is recommended, since eliminating foods from a diet can cause inadvertent problems with nutritional deficiencies.

For now, I'm sort of continuing to eat most of what I have normally been eating - a generally healthy diet with allowances for some less-than-healthy foods and treats now and then. However, I am being cautious about almonds and switching to rice milk and soy milk for a while, to see if that makes a difference. When IBS symptoms appear, I also have the good and bad lists of foods on the low FODMAP diet printed and handy, just to see if I've been eating perhaps too much from the bad list and not enough on the good list.

There are many lists online. Here are some pages that I liked because they explain things a bit and have printable images listing the foods in each category and they are logically grouped.

http://www.cassandraforsythe.com/blog/Low+FODMAP+diet+has+been+great+for+my+gut
http://cassandraforsythe.com/blog/Complete+FODMAP+List+For+a+Happy+Gut
http://dysbiosis.blogspot.com/2011/04/fodmap-diet.html

Here is the page I found that introduced me to the FODMAP concept and informed me about the IBS connection.

http://ibs.about.com/od/ibsfood/a/The-Fodmap-Diet-For-IBS.htm

I'm hopeful that this research can be helpful to IBS sufferers like myself and give them more power to help control or at least minimize their symptoms. As always, if you have knowledge or experience relate to this topic, please comment below.

What's your favorite app on your mobile phone?

2011-09-16T21:46:00.001-05:00

Astrid. It's a task management application. There are enough options to help me manage it all and I love checking things off as done.

What's on your mind? Fun or serious questions welcome.

ow oW OW!

2011-09-06T18:08:00.002-05:00

I just got through telling my fibro doctor last week that I don't want to treat my sciatic pain with medication because it's so unpredictable and quick, that I am just trying to cope with the pain as it occurs as best as I can and wait until the lightning pains subside. I never know if it's going to last for seconds, minutes, or hours, but most often it's seconds. Most frequently, the sciatic pain is in the back of my right thigh and buttock, no lower than my knee and usually no higher than my butt. I take enough pills and meds for the fibromyalgia, myofascial pain, sleep problems, asthma, and all that stuff. I figured one more pill might not be a big deal, but it's money I likely won't be able to judge as well spent if I can't tell whether it's preventing or reducing these quick pains. Not worth it unless it starts firing constantly again, like it did right after the car accident that seems to have started all these ills.

My sacroiliitis, however, is more on my left side, and in my hip, around to my lower back on the left side. Well, right this second, my left hip and lower back are firing lightning-style pains into me and making me jerk in surprise, much like the sciatica usually does. This is not good. The left hip usually aches in a dull, inflammatory kind of way, sometimes more than others. What is this new, intensely painful shock-like pain now? Is this sacroiliitis or is this some variation of sciatica on the other side? Can sciatica fire upwards from the buttocks, rather than just down into the leg? I've had my left leg feel the same kind of lightning pains as the right, but much less often than the right. And right now, the leg is not being affected. It's very much nerve-like pain and I feel it deep in the pelvic bone and up a bit in the back.

When my doctor and I discussed both of these problems a week ago, he poked and prodded me a lot to see how my nerves, reflexes, strength, and tenderness are in the piriformis and sacroiliac areas, down through my legs and feet. The tenderness testing supported his left-side sacroiliitis diagnosis and the sciatic nerve impingement on the right by the piriformis muscle (a thin muscle that stretches diagonally across each buttock). (Wow, I've never the word "buttock" so many times in one post before.) Anyway, he also made a passing suggestion, before all the poking around, that I may want to get (another) MRI or scan of my sciatic nerve areas, in case there is something really wrong.

Since this isn't really a new symptom, and since tests are a pain in the buttocks (hee) for chronically ill people like myself, I declined. Now I'm not sure I should have declined so quickly. I guess I'm tired of having to go through all the trouble of making the test appointment, scheduling my work around it, enduring the IV poking (which almost always takes multiple tries) and waiting around for the results, which usually find nothing of any interest. You other fibro people reading this, I know you know where I'm coming from. You want to hear something other than "everything looks fine" after being tested. I don't think they have the right tests out there for us yet. Until then, it feels like a bunch of trouble for nothing.

Anyway, if you can relate to these new, shock-like pains that are firing from the hip up into the lower back, toward one side, let me know about it. If I have a hint of what it's called or how to sit or what to do to ease or prevent it, I'll be happy.

Locks of Love Haircut

2011-08-31T21:51:00.000-05:00

I have been growing my hair since 2007, my last Locks of Love haircut. This time, I was able to donate a 13-inch ponytail to this charity for cancer kids. My husband shot video of the event, at my request. Here's the video.

My philosophy of giving to others in need as a healthy form of distraction from my health problems applies here. It doesn't hurt to give away some hair and not getting frequent haircuts fits right into my busy schedule. Come on. Do like me and grow out a pretty little pony tail for some unlucky kids who have to endure chemotherapy. 10 inches is the minimum.

If you're interested in donating to Locks of Love, it's easy! For more information on donating to Locks of Love, go to: http://www.locksoflove.org/donate.html

Stressing and Pacing with FMS

2011-08-26T11:16:00.001-05:00

My last post showed you how I look when my face gets all hot and red. I've been noticing that's died down a bit now, thankfully, though I still notice hot flushes. Actually, maybe I'm just getting used to it and noticing it less, rather than the actual occurrences being reduced. At any rate, I don't always check how red I look now. I just wait it out and go about my business. I'm usually at work when it happens, so I have plenty of distractions.

Speaking of work (well, writing of work, I guess), it's been quite ridiculous with all the meetings, tight deadlines, and lots of work to do and no time to be at my desk to actually do it because of all the damned meetings! I am working on a new, very important project that is expected to be delivered in a few months and things are moving quickly on it. I guess that would be fine if it weren't for the other, usual work things that come up, and if I didn't have to deal with chronic health issues - all at the same time. In addition, there are other things going on in my life - loved ones with health issues and strained family relationships - that are adding to the stress pile.

The net effect of all this stress is that my body has been nagging me about taking a break. Meanwhile, I've been asking it to please wait for a better time to argue with me. Well, I give up. Today's the day. Okay, body? After I post this blog entry, I'm going to bed to rest. All day! That's going to have to do. I have too much going on to spare more than a day at a time. I also don't get paid for this time off, so I don't want financial stresses added to my pile. It's a bit of a catch-22 that way. Anyway, I'm willing to compromise with this day and see how long it gets me. Next week's work schedule is nuts all over again, so I'll have to be ready. If I'm not, there's going to have to be some rescheduling, I guess. It's nothing I haven't done before, but I really hate the feeling. I guess I need to get over that.

It's like I keep telling my friends: I can't help anyone else until I help myself. Remember the oxygen masks on the airplane. They instruct adults to put on their own masks first, then help their kids or others. If you faint, you can't help anyone. I try to picture that during times like this. I need to listen to my own advice more often. I'm still learning how to live with this fibrobeast.

Facial Flushing is a Side Effect of Savella!

2011-08-16T19:49:00.001-05:00

Last Sunday, after posting photos of my extremely hot and ruddy face on Facebook, I confirmed that the new drug I'm on, Savella, includes "hot flush" as a commonly reported side effect. From what I read, it appears it's relatively common, but less common after the first month of use. Since I'm newly switched to Savella, I'm hoping my daily flushing will dwindle away.

Here are the pictures, in case you're wondering how it looks.

Note: I used Photo Booth and the pictures are reversed. (The big zit is actually on my right cheek.)

Here's one of the resources that led me to believe it's the Savella:
http://www.ehealthme.com/ds/savella/blushing

Sciatica and Sinus/Face Issues Continue

2011-08-11T13:03:00.000-05:00

Just hoping to leave a quick update here. I'm continuing to experience at least daily episodes of sciatic nerve pain in the back of my right upper leg. It feels like sudden lightning bolts of intense pain that strikes, usually without warning, and fires at will for however long it wants - sometimes it's one or five quick strikes, sometimes it goes all day. I frequently jump from the startling pain. It's very bizarre.

One of my past doctors suspected my Piriformis muscle was impinging upon this sciatic nerve because it was so tense after I was rear-ended a few years ago. I don't know if I'm asymmetrical or what, but the right nerve acts up significantly more frequently than the left, though I have had it occur on the left, occasionally.

When it happens, if possible, I try to put pressure on the painful area behind my thigh, sitting on a tennis ball if available, or/and bring my foot up to my other knee and lean forward to stretch and loosen the Piriformis muscle in my butt, which is supposed to help. With Myofascial Pain Syndrome tensing up most of my muscles all of the time, I am likely going to have to live with these intrusive little surprises for the rest of my life, so I'm trying to deal with it as best as I can when it happens, then just go one with whatever it interrupted (work, walking, dinner, sleep, etc.).

There's also been an odd facial heat thing going on with me and that is continuing and possibly worsening. Two nights ago, I felt significant sinus pressure and discomfort in my face. I had developed a painful sinus headache that prevented me from sleeping most of the night. The pillow would not feel comfortable to my aching head! I had that headache most of the day yesterday, and it settled in the sinuses just above the bridge of my nose and above the eyebrows. In addition, starting last night in the evening, my nose heated up and turned really red for several hours. All this for no apparent reason. I didn't hit it or blow my nose or have congestion or get sick or anything. It just turned red, like Rudolph. It was blazing hot to the touch - even hotter than my cheeks. I'm noticing that it's happening most of the day today. :(

Googling and suspicions have gotten me as far as suspecting sinusitis, a respiratory infection, allergies, or rosacea. This is all new to me, so I'm not sure what's going on with my sinuses. I just hope it's temporary and not serious.

Sacroiliitis Acting Up

2011-08-07T16:58:00.000-05:00

I have been hurting in the hips and back, as well as my knee and foot for the past week. It seems to do whichever pain it feels like for the moment but something is always wrong.

I have even had to use my cane at work one day when the bottom of my foot could no longer deal with the pressure of standing or walking on it well. I was told I have sacroiliitis in my left hip, but if -itis means infection or at least inflammation, why is this not more urgent than it seems to be to my doctor? My only treatment thus far has been a belt to keep the joints secure and the occasional NSAID, which I'm not thrilled about using after the gastro problems I dealt with a few months ago.

I've been having hot flushing in my face in recent days, especially in the evenings, and it's not necessarily due to the hot weather, as I'm keeping cool indoors with air conditioning and fans. I'm concerned about something ugly happening inside my joints and spreading for some reason.

The sciatica pains have been firing up a bit lately, too. I'm sure it's not a coincidence, since they are all around the hip area.

I've been very uncomfortable with sitting or standing lately, and lying down has been the best position I can find while dealing with these pains, but I'd like to figure out if there's something that needs to be addressed. I hate the thought of having to deal with some emergency later because all the early clues were missed.

Switching to Savella - Guess Who Called Today

2011-07-27T12:16:00.000-05:00

My fibro doctor, Dr. Wilkin just called in reply to my message from last week Tuesday. He may have been out or something last week because he said he's been trying to catch up on a ton of messages and when he saw mine he gasped and had to call me back right way (now). He apologized numerous times for not calling sooner.

I told him I was a lot better now, but had to deal with it all alone, and that I'd wished I'd been better warned about the withdrawal symptoms because the timing was pretty poor (for work) to be going through all that. He said he'd had numerous patients change meds like this and not report any problems.

I asked specifically about the hard stop on the Pristiq and the slow increase on the Savella and if what I experienced was withdrawal from Pristiq because the Savella wasn't compensating enough. (See the lovely chart I made above that shows my dosing change for SNRI meds. The yellow highlights the week I was switching over... and miserable. Notice the big dip in meds during that period?)

He said that may very well have been it. I asked him what he would have told me if he'd gotten to my message sooner and he did say that increasing the dose on the Savella sooner would probably have been justified. I said I wouldn't dare do such a thing without his guidance, of course, but had wondered if that would have been a possible solution. He apologized again for not calling sooner. I told him to please keep this plan in mind for the next patient that may be switching to Savella from another similar drug: to have them take the higher dose sooner, and not wean up. He agreed that was a good idea. Future patients: you're welcome. :)

If you're going through this kind of SNRI or SSRI switch yourself, or will be soon, please ask your doctor about filling that gap in dosage and if you can possible skip the misery I went through by cutting over from full dose of one med to full dose of the next, especially if you're going from Pristiq to Savella, specifically. Everyone is different, and every combination of medications can be different, so don't make assumptions. But do stay informed and keep open communication with your doctor, preferably before any problems occur.

My "Pages" are Finally Updated

2011-07-26T14:05:00.000-05:00

A while back, I added what Blogger is calling "pages" to my blog. This is the top row of links to other content on my blog. They've been under construction for a long time, but I've finally updated them. They may get updated in the future, but at least there is substantial content there.

Here are links to those pages, for my subscribers:
Home (same as before - my posts)
About Me
Fibro Info
Native Gardening
Craft Beer
Other

As always, I welcome your feedback. Enjoy!

Switching to Savella - Done?

2011-07-25T16:20:00.000-05:00

Yesterday I felt relatively "normal" (for me) and I think the brain zaps are pretty much through with me, finally. I am still dealing with some odd sensations and discomfort, but after what I've been through, I've decided to try to keep looking forward and enjoy the progress I've made.

Although, to be honest, I have noticed I'm a bit cranky at work today. That could have nothing to do with the meds, though, as quite a few people on my team are missing and stuff is piling up and feeling a bit overwhelming. I'm doing my best to just pick something and do it so I can get it off my list. That's the best strategy I've ever been able to implement for dealing with having way too much on my plate. Just do one thing at a time until it's done and don't worry about the new things being added. A Benia's work is never done. ;)

I don't really want to admit this, but I have had some very minor nausea this morning. I grabbed one of my sugared ginger cubes from my stash and sucked on that for a bit, which helped. I have been nauseated for no apparent reason before the switch, so it could be nothing, but the top side effect of Savella mentioned by both my doctor and the medication information leaflet is nausea. Remembering how terrible the nausea was with Cymbalta, however, still makes me feel like this is going to be just fine.

Also, in the interest of full disclosure, I've been noticing some fast heartbeats and possible palpitations since starting on Savella. It's one of the possible side effects, but it was also possible with Pristiq, my old SNRI. I have been susceptible to tachycardia since I was a teenager, when I had my first scary episode, though no doctor could tell me why. It could be that Savella is exascerbating that now, but hopefully it won't last too long. The worst time is when I'm trying to sleep and I feel my heart just pounding away like a disco beat.

So, with this mostly behind me, I'm going to get my focus back on getting my tubby body back into some sort of shape. I'm trying to get back on my Baby Steps wagon, and have been trying new ways to strengthen my muscles - starting very slowly, of course. I felt some soreness in new places from the new exercises, which was a bit of a reward for me. I am also trying to get out in the sunshine and walk more, too, while summer's still here.

Hope these posts will help someone, either now or in the future!

Switching to Savella - Day 7

2011-07-23T21:44:00.000-05:00

Despite more violent thunderstorms last night and remaining awake since the 3am tornado siren, I felt like this morning was much better, symptom-wise, than yesterday. I was able to sleep some of the night without covers or without having to completely burrito myself in all three layers of blankets, which was a great improvement for me with the temperature stuff. Then I also felt less dizzy and brain zappy, too, even after being up for hours and moving around a bit.

I did some of my Baby Steps exercises and when Don got up, we walked around the block in our rain jackets and had a little banana bread for breakfast. I went back to bed and napped for several hours and felt I was able to have beer again! That's a big improvement! We went to one of our favorite places - Bavarian Lodge in Lisle, IL - and enjoyed a couple of interesting new Belgians on tap there. I was also very good about ordering a salad, though most of the food is deliciously fried and German, because I'm still working on getting some of this weight off.

I'm looking forward to taking my first top dose pill of Savella tomorrow morning, and then heading off to meet up with a fellow fibromite friend of mine for brunch.

I don't want to jinx anything right now, but I had a good day today and felt almost human again. After several days of being way off that mark, this is a huge relief for me. I'm hoping the withdrawal symptoms from Pristiq are behind me and that Savella will improve my Fibromyalgia symptoms, as my doctor and I are hoping.

Oh, something I'd forgotten to mention in yesterday's post was that I was dealing with a little sciatica attack when I went to bed early on Thursday night. It was in my worse leg -the right - and always feels like sudden lightning strikes inside the back of my leg. Not fun, but at least it only lasted a few minutes.

Also, no word, of course, from my doctor. He's definitely going to get an earful at my next appointment about all of this.

Switching to Savella - Day 6

2011-07-22T20:24:00.000-05:00

That indescribable feeling of being uncomfortable in my own skin and being unable to find comfort that I have been getting in the evenings happened again last night, so I went to bed at 8am, hoping to escape it with sleep.

I also managed to get a decent night's sleep, despite some magnificent racket outside. A huge thunderstorm rolled in last night and the thunder cracks sounded like the storm was right on top of us for a while. I listened to the pounding rain and the thunder for a bit, but still managed to get back to sleep. Hooray!

So, today, after several days of feeling dizzy and clammy and various other kinds of ick, I decided I had gotten used enough to the ick feelings to try to drive to work today. The brain zaps seem to be occurring less frequently lately, and I think going through the normal routine helps me to not feel so much. I managed to get through the drive with extra care and focus, and at the office, I caught up with my coworkers and did some light work. Luckily, it's the day after a release that went well, so things were very low key and low stress today. Thank goodness!

I did have some issues with temperature in the office. The air conditioning chilled my hands, yet I could feel the sweating on my torso continuing. I was uncomfortable and had my rain jacket on and off throughout the day to adjust. I also had some hot beverages to try to warm my hands up.

Concentrating was kind of difficult, as I remember doing roughly 20 things at once and not really doing them well or feeling like they were complete. I hate that feeling. I'm usually multi-tasking at work, but today I was more scattered, unable to finish things up and feel good about it. When the end of the day came, I had to give up trying to finishing anything and just get myself home. Now here I am.

There something else I wanted to note here about my symptoms. I have had feelings of not quite knowing who I am for a bit during all this. I don't mean like I had amnesia or anything like that. It's just kind of like I was on the outside, looking in, and felt not quite ME. Or perhaps I feel like I'm some sort of cartoon version of myself. Maybe cartoon isn't the right term, maybe it's like wearing someone else's persona, involuntarily. It was odd enough anyway. I can't quite describe it.

Something else that may or may not be related to any of this drug withdrawal stuff is that my right hand, my mousing hand, is very uncomfortable and somewhat tingly as of yesterday. Perhaps I've been computering too much without taking a break, but it's hard to get it to feel okay. I keep shaking it and trying to get the blood circulating properly within it, but it continues to feel strange. I hope this weekend will help it relax a bit and maybe get back to feeling normal again.

On that note, I'm going to go rest my hand and try to continue to pretend I'm normal and see if that helps me adjust a bit. I'm hoping tomorrow I will feel even better than I did today. My first full dose of the Savella will be Sunday morning. I'm not expecting to feel back to normal on Sunday (though that would be awesome), because it seems to take a little while for my body to adjust to anything. My hope is that by about Wednesday or so next week, I may feel like my "normal" (fibro-ey) self again.

Time to find some dinner...

Switching to Savella - Day 5

2011-07-21T15:57:00.000-05:00

I've been working from home again today and I noticed the brain zaps are getting less frequent, perhaps because I've been at the computer most of the day. I'll take it, whatever the reason. My abdominal issues are still there on a low level, too, but I've been managing and trying not to listen to the gurgles or think about it too much.

Last night I noticed I felt this odd kind of restless, unsettled, discomfort feeling in my body. At first I couldn't find a comfortable position for my feet while watching TV, but then I realized I was trying to shake off some sort of vague feeling I couldn't name. I don't know if this is related to the drugs at all, but I'm noting it anyway because it's weird. I felt like I wanted to get away and go to bed, but when I did, the feeling followed me there, too. I am still having some of this now. I may need to try to move around more to distract my body.

I am getting better at handling the temperature issues, I think. Last night I was baking up some banana bread muffins even though the weather this week has been near the 100 degree mark with all kinds of cautions about it and everything. I managed to make the muffins and make some salad for dinner, too. I was tired, but I felt useful, which was good for my mental state.

I also went to bed without my jammy pants, though I still needed the shirt and socks. Plus I was okay with not being buried in the blanket. That's an improvement. I ended up waking up at 3am, though, with a headache and inability to get comfortable, so I didn't get much sleep. It may just be my normal insomnia combined with odd sleeping temperatures and other factors, like the headache and bellyache. I got up at 4am when I realized sleep wouldn't be back so my husband could get some sleep.

The good news is that I managed to shower AND get dressed in real clothes today - not just swaddling clothes, like for the past few days. I even brushed and did my hair! It's almost like I'm a real person again.

Then I went outside, picked up the mail, and looked around our yard a bit. Our poor plants are all so tired from the drought and heat, even though they are hardy natives, many of them prairie plants. Still, there was life to be found, though, while bumblebees, dragonflies, damselflies, cicadas, birds, and even baby bunnies all went about their business collecting food and doing whatever else they need to do in our little yard. After meandering our path for few minutes, I went back inside to get back to work. (The release looks like it might go well.)

I have not yet heard anything back from my doctor. :P

If all goes well tonight and tomorrow morning, I just might be able to drive into the office for work tomorrow. Won't that be something! No promises yet, though. There's no telling what's around the next corner when it comes to this kind of stuff. Stay tuned...

Switching to Savella - Day 4

2011-07-20T16:06:00.000-05:00

Just when I think I'm getting the hang of this brain zap and sweating thing, I am finding that my body is not done finding new, weird things to do to me during this medication change.

I have been having abdominal pains here and there, but today, they have escalated into full-blown diarrhea. (Some of last night's dinner looked familiar.) What the hell? I didn't know this was part of the program! Is this the next thing I'm going to have to live with for a while or what? Boo to that!

After being unable to deal with the idea of working for two days, I decided I'd try to work from home today. I figured since I was able to handle the brain zapping pretty well while doing various personal stuff on the computer, I noticed I could keep my eyes and body relatively still, minimizing the effect. It's still pretty crazy once I get up and move around, especially on the stairs, but I go slowly and hang on wherever I go. Thank goodness my shower has a bar to hold onto or I'd have fallen for sure!

The workday at home has been okay so far. I've managed to jump back into the projects and get some urgent things taken care of. (I work in IT and this happens to be a release week, so deadlines are tight. Figures, right?) Anyway, I feel better about catching up a bit, and not having to go completely broke by taking even more time off work. A day's work really adds up to a lot of money that I miss when I have to take unpaid time to be sick. It's better than being fired, though, so I count my blessings and I'm happy to have employment and benefits.

Anyway, back to the update on this drug transition...

I noticed a little bit yesterday, and a bit more today, that I am a lot closer to being on the verge of tears. I've been pretty good about not crying much since being on the meds and understanding Fibromyalgia and how it goes over the past several years. Imagine my surprise, then, when I found myself feeling like I was about to cry and actually let out some tears while watching television today at lunchtime. It doesn't seem to take much at all right now. Someone talking about something sad, an emotional moment, even stupid commercials are all making that feeling of tears welling up happen to me. It's dumb! I don't care about these actors pretending to be sweet or sad to sell me products! This is ridiculous!! I hate this feeling. I've already fought off tears about 5 times today, just from dumb stuff on tv. It's got to be part of this withdrawal stuff or else I'm really confused about myself.

I noticed I was kind of snippier and angrier yesterday or a couple days ago, but that seems to be changing into some kind of sappiness. Geez, chemicals, figure it out already. I'm not in the mood to rediscover who I am or go on some emotional roller coaster... for nothing. Bleh. I just want to shake it off.

Oh, the sweating and my intolerance of cold or any slight breeze seems to be subsiding a bit today. I noticed I was actually uncomfortable in the hot office at home here today and, to my surprise, I turned the ceiling fan - and liked it. It's been on all day and I'm mostly okay with it. I'm still sweating because I don't want the air conditioner on yet, but I'm glad I can handle at least a hot breeze now. Perhaps later or tomorrow I'll be able to actually be cooler without bundling up in a thousand layers of blankets. Dare to dream...

Oh, by the way, I took my first medium dose of Savella this morning, so perhaps that has something to do with the noticeable changes of today vs. yesterday. The titration pack starts on a low dose, works up to a medium dose, then finally, by the next week, the full dose that I'm supposed to stay on indefinitely. I'm hoping I'll be in the clear about this time next week, after a couple days on the highest dose. Until then, I'll just have to keep adapting to the surprises. I guess I can thank Fibro for the training on that one. ;)

P.S. I finally got through to my prescribing doctor's office yesterday afternoon and left a message for the doctor about maybe getting some sort of guidance for this transition (since he implied this should have gone a lot more smoothly than it has been). It's been almost 24 hours now and I haven't heard a peep back from anyone. Nothing. Not a "he got your message and will let you know what he finds out" or a "he will give you a call tonight" or even a "go to hell, you're crazy". For all I know, the girl who took the message never even gave it to him. I'm not going to hold my breath about this, since he seemed not to be informed about any of this in the first place. It's a shame that so many patients have to go through much worse than this without help from doctors or anyone, because it's covered up. How rude, drug companies! Even if it's physically addicting and a bitch to get off of, let us know the deal and we'll decide if it's worth it or not. Then help us out when we have to go through this. People are trying to quit these kinds of drugs and are in utter agony. It's so wrong. If the drug company wants to make more of my money, I would suggest being open about all of this and researching the best methods for getting off when it becomes necessary for whatever reason. Don't just pretend it's not happening. That is not cool!

Uh-oh, there's my snippiness again. Sorry about that. This issue really irritates me. People disappoint me time and time again. I just don't see how they can go on continuing to be assholes. If I had the power they had, I'd use it for good, not evil.

That's enough for today. I'll check back here tomorrow.

Switching to Savella - Day 3

2011-07-19T13:51:00.000-05:00

I am at home again today, with the air conditioning off, sweating profusely and my feet are still cold. My bones feel cold and achy. I'm sure my boss is not happy with me, but he should be happy he's not going through the crap I'm going through.

My brain zaps are continuing, which is the main reason I did not go to work. I noticed there is a weird kind of tinnitus thing that happens with each "zap". It's like the momentary deafness that can wash over your head from time to time? (Or maybe that's just me.) Anyway, when I move my eyes around I notice it most. The ringing kind of gets louder for a second, I feel like I'll pass out, and there's some sort of pressure or lack of pressure or something that I feel in my head. I hear ambient noise in the room at a slightly louder volume when it happens. It truly is hard to describe. The most disconcerting part is feeling like I'll faint. I don't trust that I won't. I hang onto walls when I walk and I go very slowly.

Perhaps the emotional stuff is coming around. I feel a bit more irritable and angry about this. I know it is temporary (I hope), so I just need to get through it. I just hate not knowing when I'll be okay and can resume my new normal life again. If my doctor had warned me that I'd have a week to feel completely wack and wouldn't be able to work, I might have tried to plan better or take vacation time from work or something. Instead I'm in this and I just have to finish it, no matter how long it takes. There's no going back now.

Switching to Savella

2011-07-18T17:01:00.000-05:00

During my last visit to the neurologist/pain specialist on June 21, 2011, my doctor strongly suggested that I switch from Pristiq (an SNRI much like Effexor) to Savella (an SNRI approved for Fibromyalgia treatment, specifically), to see if I could improve my FMS symptoms. I have been on the Pristiq for... I think 3 years now. It was prescribed by my previous Fibromyalgia doctor. I had heard that Savella has been helping other fibro patients, so I agreed to give it a try.

I am starting Savella via a couple of the starter titration sample packs, which gradually works the dosage up over the course of one week or so (two weeks, if necessary due to side effects like nausea, per the doctor). Once I achieve the top dose, I can fill the prescription and carry on with the full dose.

Well, today is day 2 of my switchover from Pristiq to Savella. I took my last Pristiq tablet (it's a once-daily AM dose) on Saturday morning and took my first tiny dose of Savella yesterday, around 3pm. The first dose of Savella is an evening dose, but I wasn't sure if I should wait until bedtime to take it, since it meant being without either drug for almost a whole day, so I compromised and took it in the middle of the day. Perhaps I should have waited? Anyway, a few hours after taking the first dose yesterday, I started noticing a frequent, intermittent dizziness. Also, despite the summer heat outside, I was getting goosebumps from the fan air blowing on me and needed to get a sweatshirt. I later felt chilled to the bone and had a hard time warming up. When the dizziness got worse with every movement or any eye movement, I wondered if perhaps I was experiencing withdrawal symptoms from stopping the Pristiq so suddenly and not moving right into a full dose of Savella... or if the Savella was causing its own side effects. It was a Sunday, so there was no calling the doctor. I did what any of you would have done: I searched online for clues.

From what I could tell in my research, the dizziness I'm experiencing is something similar to what people call "brain zaps". This term is used among patients to refer to a very strange sensation in the head while trying to get off medications that are physiologically addictive. Apparently anti-depressants (both SSRIs and SNRIs) fall into this category and my body is acting this way because it misses what it's been used to for a long time now. I learned about a lot of ways people try to describe this sensation, but it's difficult. For me, it's like feeling I'm going to faint for a half-second, but over and over again very rapidly, especially with any movement or eye movement. It's almost constant, but not quite.

Needless to say, it's hard to ignore and I took a sick from work today because I couldn't imagine driving or working in this condition. I napped away most of the day today, because it was all I could do to make this feeling stop - being unconscious. I also dreamt very odd situations, but I don't think that's anything unusual for me. My dreams tend to be very detailed and vivid, though they don't always make sense after I wake up and think about them. It may be a fibro thing, a Pristiq thing, or maybe even just a "me" thing. Who knows? Also, my heart sometimes palpitates. Today, every time I woke up from sleep it was pounding for a short while.

Anyway, while doing research on these effects, I had to learn about all of it from patients themselves. Of course I went to the official drug information first, looking for their list of withdrawal symptoms and instructions, but, oddly, those could not be found. Come to find out, there has been quite a bit of controversy about drug companies hiding the research data on withdrawal effects. In fact, they refuse to call them withdrawal effects. They renamed them "discontinuation effects" wherever forced. There are investigations and lawsuits on a federal scale into the lack of information about how frequently these effects occur in patients who stop taking these drugs, presumably because it might hurt drug sales. My doctor didn't warn me at all about having to deal with any sort of withdrawals or discontinuation effects while switching over from Pristiq to Savella. I believe he simply does not have the information because it was omitted or downplayed by the drug reps and their research. Even I knew that stopping SNRI "cold turkey" would likely result in some sort of withdrawals, but I assumed that since I'd be starting on another SNRI right away, that I wouldn't have to deal with any of that. I could be wrong, but I think I'm going through withdrawals right now anyway.

Thanks to the plethora of information on the Internet from patients who have told their stories, I was able to understand that what I'm going through is connected to the chemical changes in my body. However, if I hadn't known about withdrawals from SNRIs, I might have had to endure more troublesome psychological effects, or possibly done something counter-productive, because of this lack of information. I'm including all this here because I know eventually, someone like me will be in the same position, looking for answers, and hoping to understand what's going on with symptoms like this. I hope this information is helpful to someone out there.

I'll try to keep posting on my progress here as things change. Let's hope it's not too difficult for me. I've read that many patients who make it onto the full dose of Savella do finally find better relief on it. I hope to be one of them soon. Wish me luck!

Weird Timing for Pain

2011-07-11T19:07:00.000-05:00

Did you ever get sudden jolts of pain during odd times - usually with people around who wouldn't understand?

Today, my first day back at work after a week off, I was in a meeting with my boss and two coworkers. While discussing upcoming projects, my sciatica started acting up out of nowhere. I was probably making faces because it comes on so suddenly and fires those lightning bolt pains in the back of my right leg in rapid succession for several minutes.

I said nothing about it, of course, because we were involved in the discussion of the topic, but, needless to say, I was having a hard time focusing on the meeting. I grabbed my leg and wondered if I could voluntarily NOT wince so I wouldn't have to explain or be asked what's wrong. Well, nobody asked anything, but I'll never be certain that they didn't wonder if I was judging the discussion with my odd facial expressions or something.

Ugh. What a pain!

Exciting, New Flavors of Pain

2011-06-28T18:26:00.000-05:00

First off, I'm happy to report that my bout of food poisoning has finally subsided. :)

After being in constant and varying Fibromyalgia (FMS) & Chronic Myofascial (CMP) pain for almost 5 years now, I'm surprised to find that I'm still experiencing some new, unfamiliar pains.

Having declared (only recently) that I have finally graduated to the final stage of grief - acceptance of my chronic illnesses - I thought I'd figured out how my new, broken body works to some degree. Sure, it's still unpredictable, but understanding the unpredictability kind of helps it be more predictably unpredictable. Words fail me, but I hope you know what I mean. Come to think of it, since Fibro Fog is part of the new me, perhaps these pains aren't really new. Perhaps they are just pains I've had but don't recognize this time around. Perhaps I'd experienced these pains earlier, but I was too new at this chronic illness thing and didn't quite understand what it was. Heck, I'm not sure now, but I have a hunch it's got something to do with FMS or CMP.

At any rate, I'll try to describe how these weird pains feel...

Last night, I was sitting on the couch with Don, enjoying some evening TV. Suddenly, out of nowhere, my lower left pelvic region felt like shards of glass were trying to break through my abdomen to run around the house, screaming. It was abrupt and made me "ow!" out loud, confusing Don as to what he might have done this time. I reassured him that it was nothing he'd done and felt it again. It was odd. I was happy to find that it settled back in and left me alone for the rest of of the night.

Today, I started my day feeling like I'd been run over by a Mack truck, but I still don't know why. I slept, dreamt, and don't remember exerting myself too much lately. (Although who knows what my thresholds are these days?) Eventually, I crawled into the shower and spent far too long trying to make the peppermint Dr. Bronner's soap wake me up or something, I guess. I got ready and drove myself to work. Getting out of the car was challenging, after having stiffened up during the drive (about a half-hour). I walked toward the building feeling sore in every last muscle from my butt down. Interesting, but nothing too unusual. Soreness is a fact of life for me now, even when I don't know exactly what I did to earn it. A few hours later, though, after going about my business at the office, I noticed my neck and shoulders got extremely tight and sore. My back hurts a little oddly too. It's like some package of misfortune has descended upon my upper body. What the heck? I try not to take too many as-needed meds if I can help it, but this seemed to warrant a muscle relaxant.

I'm still experiencing this high-level and sudden shoulder/neck stiffness and pain right now, and the legs are still sore when I walk. What happened? Was it something I did? More importantly, what's next??

I'm due for a vacation soon. Don has become wary of planning excursions with me lately, since he never knows if I'll be up to enjoying things with him, or if he'll end up having to try to enjoy something without me. I am convinced that if I am "on vacation" and not worrying about the usual stuff, my body will be more cooperative and let me have some fun without making me crash. I definitely won't be running marathons or anything crazy, but I think being pleasantly distracted helps keep stress levels down, which in turn, helps to keep my body processing working a little better than usual.

Cross your fingers for me!

One Stress Declining; Another Rising

2011-06-19T10:37:00.000-05:00

As my work project is finally coming to its fruition this very day, the buildup of mental stress is beginning to wane. It seems everything has been going reasonably well and any problems that may occur with our project should be relatively minor and manageable. I'm sure there will be unanticipated little snafus here and there, but thus is any IT project. We learn as we go, maintain and fix bugs as we continue to find them, and make continual enhancements. So, I do finally feel better about this.

Physically, though, I've got a new stressor. Let me give you the background first.

Last Thursday, my employer threw a lovely picnic for us all. I had a great time, sang karaoke, even danced and enjoyed life for a while. It was surely confusing for all my coworkers to see me looking as if I wasn't in any pain at all - especially the ones who don't understand Fibromyalgia and it's ups and downs.

Anyway, I had been developing a headache near the end of the party, though I ignored it as part of the deal for feeling great and having a few drinks. I met up with my husband afterwards for water, coffee, and a half-sandwich. I continued to ignore the headache, hoping the water would help keep it at bay. I went to sleep expecting it to be gone or mostly gone by morning.

That night, I woke up around 1am feeling absolutely awful. The headache exploded to a level 7 or 8 and I felt very uncomfortable. I was nauseated, too, which happens with severe migraines, so I grabbed a couple of Triscuits and water from the kitchen. Literally, after the first Triscuit, I had to run to the toilet.

I'll spare you the details, but it was pretty clear that this wasn't a typical migraine - it was food poisoning, and my body was getting rid of what I recognized as potato salad cubes, even though I'd only had a bit at the picnic, and it about 12 hours earlier - before my dinner sandwich meal. I felt a little better after the explosive "episode" was over, but not fantastic by any means. I assumed I was on my way to feeling better and went back to bed and slept a bit.

I went to work the next morning, still feeling the workout of my guts and assuming they were just tired and recovering from that night's activities. I had green tea to help chase away any bacteria. I'd also found out others were ill from the picnic food, too, which confirmed my theory. It was a hot day, so it makes sense. I just wish I'd thought to avoid the "cold" foods. (Lesson learned!)

As the day wore on, I started feeling more pain in the guts again. It was building up again. I left work early and read about typical food poisoning and how to self-treat. I assumed it was over that day, but apparently this thing can last a few days - and it is still affecting me today, three days later. I'm hydrating and eating only bland foods and sparingly until things improve. When the pain comes on, it gets hard to stand up straight, or tolerate any movement.

At least I know this is one of those temporary things that normal people get. If this was just some random Fibro symptom, I'd be much more confused about how long it would last or what it means. I'll just try to rest my guts and body until this passes, though I still need to get to work to deal with any fresh problems with our new application.

Never fear, though, I've got vacation time scheduled in a few weeks and will be getting some R&R soon. Just knowing that helps relieve stress.

The Mess of Stress

2011-06-13T17:38:00.001-05:00

Stress is a mess. Okay, I just wanted to rhyme that, but it didn't make much sense. I should say it can make a mess of me.

There's a huge, whiz-bang project going on at work that is (hopefully) going to come to fruition this weekend. I work in IT and this is a new business application that our team has been working on for many, many months now. There's been lots of testing and fine-tuning, and I haven't been able to afford the luxury of a sick day in a few weeks. There is too much to get done and I don't want to be the one to delay this thing (again) so I am putting forth as much effort and bravery as I can muster.

Unfortunately, I'm paying the price on weekends and evenings, when Don wants to spend time with me, but gets a tired, achy, fibro-foggy bundle of blah instead. I spent some quality time with Don last Saturday, sipping delicious beers at our favorite watering hole. However, Sunday was pretty much breakfast together and then my collapsing onto the sofa with a feverish headache and feeling incredibly worn out. Don was nicely productive and did thousands of chores and things that needed doing. I had to make Sunday my sick day.

Well, enough boo-hooing about this, I guess. I try to remember, as I drag myself into the office each day, that I am glad I am employed and can actually still hold down a job in my condition. I know many fibromites are not working because they are essentially disabled, and in turn, broke. It's adding insult to injury that the sick also have to be poor because of the way our health system is structured right now. I have hope that someday, things will improve.

In the meantime, I am trying to get it all done and hope it's all worth it when the project is launched.

What's the best piece of advice you've ever been given, and who gave it to you?

2011-06-03T09:10:00.001-05:00

The "I'm always right" theory, from my husband Don, is very valuable to me. It's a confidence boosting way to proceed with decisions that allows for new information and changing opinions, no matter who you are. It's about what one believes to be correct at the time of question. It doesn't mean I don't make mistakes, it just means that I base my statements on what I know. As I know more, I may change my answers, but I always believe them to be right.

What's on your mind? Fun or serious questions welcome.

Anyone Miss Me?

2011-05-30T19:24:00.000-05:00

Mallory, my Fibroduck and I have been busy lately. In the nicer weather, we like to enjoy my yard, "Native Suburbia". The plants are growing, blooming, and transforming faster than we can keep track! We've even gotten some new species added to the growing list of natives we grow, thanks to a plant sale at our local Wild Ones chapter in DuPage County, Illinois.

It's been quite rainy and the temperatures have been bouncing between the 40's and 80's (Fahrenheit) in Chicagoland over the past month or so. Today I managed to get a sunburn on my shoulders, but yesterday, the storms flooded the street and our basement a little. We're due again for hot storms tomorrow. I sure hope our basement doesn't flood again.

In the meantime, I've been enjoying the good days and trying to smile through the bad ones. With help from my husband Don and my kind friends, I've been better able to keep my mood up, despite the pains and discomfort, and some added stress related to a project at work. I'm doing my best to be reliable and get my share of the work done on the project so we can get things completed on time and with as few problems as possible. So far I'm feeling pretty optimistic about it.

I'll try to keep you all posted on things more frequently. I guess I've been hoping to get away from the computer desk while at home lately. Since I am at a computer all day long at work, I feel like I need to try not to do the same at home. I get a bit behind in my blog reading and my emails, too, so don't feel like I'm just slacking here. ;)

I hope things are at least reasonable wherever you are and whenever you find yourself reading this post. I hope my next post will be happy news for you.

Delayed Pressure Urticaria (DPU)

2011-05-15T13:33:00.001-05:00

A couple Saturdays ago, I attended a great party at some friends' place. I had a great time and met lots of great people, but my body had some major bitching about the experience. The bottoms of my feet are apparently averse to long periods of standing around - especially in cute, party shoes (even though they were made by Söfft®).

I have been dealing with tender soles since that point during the party when I decided my feet had had too much and I took the shoes off. Unfortunately, the damage had already been done by then, and my feet were in so much pain that standing or touching anything with the bottoms of my feet was unbelievably painful. I had to kind of grin and bear it for the sake of preserving whatever amiability I could muster for the party and other guests. "Regular" foot pain is pretty bad, but coupled with swollen, tender, hived soles, it gets pretty ridiculous! I don't know if I can explain the feeling enough to someone who doesn't deal with this.

My skin is apparently very sensitive to many things, including: chemicals, sun or heat, cold, and various kinds of touch. I'd been officially diagnosed with dermatographia, which means that my skin hives up just from a scratch. (Paper cuts really itch a lot, sometimes before I realize I've gotten the cut.) This was long before the Fibromyalgia started.

Since the FMS diagnosis, however, I've noticed that kneeling in the garden to plant my native plugs caused me to have red, tender knees even a day or two after the hour or less of kneeling occurred. It looks really stupid as red ovals on the areas of pressure (I wouldn't wear a skirt or shorts in public if I can help it), but if they are touched, the areas are very tender and painful. Kneeling after the hive wheals have appeared is not possible without intense pain.

I've now learned that this is yet another category of urticaria/hives of which I have to be aware. Any part of my body that bears weight for a few minutes can break out in a thick hivey patch that can last for days, especially if not allowed to rest. This is called "Delayed Pressure Urticaria" or DPU. It's delayed because the damage is not apparent immediately upon the first touch - it takes time in order for the reaction to occur.

The delay is the especially tricky part of this condition. Unlike touching a hot pan, the painful feedback is not immediate, therefore the damage occurs for some time before the patient is reminded that there may be something happening. Minutes or even hours may go by, depending on the body part and amount of pressure being applied, before even noticing pain, which seems to take much longer to relieve than to acquire. By then, it's much too late to stop the process.

So here I am, almost two weeks after the triggering DPU incident, still suffering with tender feet, even before standing up from bed in the morning. No matter what shoes I wear to work, my feet are just not liking them. Any walking seems to cause an increase in symptoms, preventing my speedy recovery. All I can do now is try to rest as much as possible between necessary standing, walking, shoe-wearing, etc. to try to ease back into the normal, everyday level of chronic pain in my feet. (Isn't it great to have to wish for normal chronic pain levels? I'll take what I can get.)

Do you have DPU? Is there anything you do that helps? Please comment on this post and let me know!

Weird Weather and Possible Restless Legs Syndrome (RLS)

2011-04-22T05:19:00.001-05:00

So, first a bit of good news... It gets hard to remember to notice the little victories sometimes. That cough I had that caused me some weird pain in my left side is finally done and gone. Also, I have backed off the Baby Steps quite a bit the last week or so (okay, that's kind of bad-ish news) but my tailbone is feeling much better, too. What's funny about these symptoms is that they are so very noticeable and bothersome when they occur, but when they finally leave, they just quietly sneak off and don't say good-bye. I noticed their absence much later than when it actually occurred. Good riddance, anyway!

Here's the latest bad news... It seems the weather has been making my symptoms flare up. We've been stuck in a weird low pressure system for the past few weeks, which has resulted in cold and mostly rainy weather. We've had hail and even a couple snowfalls in the past week! The snow arrived only about a week after we had 80+ degree weather here in Chicagoland. With the wacky weather I noticed more headaches, nausea, more overall pain and achiness, and a new kind of pain that seems to have settled in my legs and feet. I've been calling it bone pain. To make matters worse, I've also been dealing with added stress from work and stuff. Things at work are a bit on the crazy side, as we get closer to a major project deadline. I'm doing what I can to stay ahead of my own work, but I can tell my team is feeling stressed from problems and snags coming up this late and the probability of having to work longer hours to get everything done on time.

Now the neutral news... I had an appointment with my fibro doctor last Wednesday. Due to my fibro fog, I forgot to bring the notes I always bring with me, but I made do with a portable pad and pen and whatever notes I could remember to discuss. The appointment was for 5:40pm and I was on time; the doctor was not. I ended up waiting over an hour before I could have my appointment. (The explanation was a new patient and a thrown off schedule. I am switching back to morning appointments after this.) Anyway, while I was waiting as patiently as I could, I noticed I could not bear to sit still due to the "bone pain" in my legs. I moved them around and tried changing my posture periodically to read and distract myself, but it was no use. After about 45 minutes, I couldn't stand to sit (hehe) any longer and started pacing the waiting area. It's a small area and there were several other patients there, so I hesitated to start pacing and make them feel uncomfortable, but then I realized: it's a pain clinic! Certainly they would understand. Pacing helped my legs, even though it was a tight area and felt a little weird.

When it was finally my turn, the doctor and I discussed the weather affecting my symptoms, my change in medications, and, as usual, the doctor asked me about my sleep. He asked me if I feel refreshed in the mornings, or tired. I blurted out "tired" as if he should have known, before I realized how rude it must have sounded. Since I'd already apologized for having forgotten my notes and mentioned my retarded brain functioning, he was formulating a hypothesis and continued asking me questions. He asked specifically about whether I am moving my legs at night. I wasn't sure, but didn't think so. He asked if my husband complains that I keep him up with my movements at night. I know my restlessness has impaired his sleep quality, which is why I try to leave the room if I'm too awake to fall back asleep (like now). But he's also a very sound sleeper most of the time, so perhaps he's not noticing what I'm doing in my sleep because he's asleep himself. Then, I was surprised to hear the doctor tell me that he suggested I undergo a sleep study to see if I have Restless Legs Syndrome (RLS), adding that RLS is very treatable and could help me get better sleep, and in turn, bring back some of my thinking skills and chase away daytime fatigue.

A sleep study? Me? I've never thought of doing one. Would I be able to sleep at all with all the strange hookups and people watching? Then there was the RLS. I never thought I'd had this, though I knew it was common for fibromites to have. I do know someone who has been diagnosed and is being treated for RLS, but I always thought I'd know if I had it. Now that I've had a day or so to chew on this possibility, I am noticing the aches in my legs cause me to move my legs around quite a bit. As the doctor explained, RLS also entails shifting the legs around to try to find a comfortable position for them, but not succeeding. I thought back and realized that I have a hard time with my legs while watching TV in the evenings as well as at work at my desk. Then there was the incident right before the appointment, which I shared with him. I guess RLS is much more likely than I had realized.

As I type here, I am up due to my waking up and being unable to find a comfortable position to relax and fall asleep. I woke up shortly after 3am and noticed my legs were aching and I was stretching my ankles and trying to chase the pain off with movements. Then I decided I wasn't going to fall asleep any time soon and didn't want to keep disturbing Don's sleep, so I snuck off to do something more productive. I suppose it would be nice if I could at least effectively treat this pain/discomfort, even if that means adding yet another drug to my regimen. As a fibromite, it's rare to have confidence that any drug treatment is going to be effective, so hearing that RLS treatments are helping people is very promising. I won't pin my hopes and dreams on it (yet), but it's a ray of hope for some improvement. I'll take that.

A Pain in the Butt

2011-04-12T09:50:00.000-05:00

I've finally moved up to 10+6 of my Baby Steps Workouts - yay me! 10+6 = 10 wall push-ups, 10 sit-ups, 6 free weight arm lifting moves on each arm, and 6 minutes on my elliptical machine, all done daily (mostly).

However, I'm noticing that my daily sit-ups may be causing my tailbone (coccyx) to become sore. I'm having a hard time sitting on hard surfaces. I do my sit-ups on carpeted flooring, and I feel the soreness during each sit-up, which is why I suspect these exercises are behind this pain in the behind. I will try using a cushion to see if that helps. I don't want any excuses to keep me from continuing to make progress with my workouts.

Although I haven't lost much weight yet, my fat percentage has gone down from 38% in January to 32% in April. This is actually going according to my plan! (Remember getting on the wagons?) Once I get my muscles strengthened up and my metabolism increased, I'll start worrying more about my actual weight. So far, I'm on the right track, so I'm very happy about that. I'm also feeling pretty proud of myself for being able to sustain a daily workout routine. When I started, I could do the 1 wall push-up and 1 sit-up daily, but I've progressed and feel stronger now. Doing 6 whole minutes on the elliptical now is actually feeling more like a workout (for me) but I notice I'm able to go at a faster pace and keep it up much better now. I'm thrilled about this.

If there are fibromites out there reading this post and think they can't work out at all, please try a progressive workout that starts with just one little thing a day. It only takes a second to do a wall push-up and you can do it wherever you find a wall. It feels really good to have done it and it's very easy to start with. Each week (or whenever you're ready) you can add one more to the daily routine. Go at your own pace. Do it for YOU! You'll feel better about yourself and build up your strength at the same time. If you're doing your own workout, leave a comment and let me know about it. I'd love to hear from you.

Exercising, Making Friends, and Blog Stuff

2011-04-06T18:52:00.000-05:00

Exercising:
I've been slacking on the "Baby Steps" lately, due to the pain in my left side, which I believe is a pulled muscle from coughing strenuously for a couple weeks straight. I did few or no sit-ups in the previous few weeks, and the rest of the workout was stagnating at level 10+4, with my doing some of the other exercises only sporadically.

A few days ago, I decided to see if sit-ups were tolerable with the remaining side pain and gave it a go. It hurts a bit, but I was able to do all 10, so I'm back on track, moved up to 10+5, and I'm doing all of my daily exercises again, starting last Monday. Whoo-hoo! It's hard work, but completing them does make me feel better, mentally.

Making Friends:
In other news, I met an online fibromite friend for the first time last weekend - VinaMist, author of her blog Just Breathe and contributing writer for the online arts journal Escape into Life. She's very nice. We had a great time talking over brunch (once we overcame my fibrofog mishap that prevented me from finding the place on my own).

We had tried to meet up once before, many months ago, but a family emergency kept that event from occurring. I'm glad we could finally get to know each other in person. It's very important to stay social with chronic illness, as it can be isolating. Befriending understanding people with similar health issues can be very rewarding for us fibromites.

Blog Stuff:
One final note: Blogger has announced a new feature for reading blogs in a cleaner format. I've included a link to this new format in my new "Other" page on the main blog. Other pages are still under construction for now, but keep an eye out for updated content on these new pages.

As always, I welcome your comments and feedback, and I'm always happy to make new fibromites friends. We are a FMily. :)

Sarcoidosis Ruled Out

2011-03-28T13:06:00.000-05:00

I finally saw my allergist/asthma specialist last week. I told him I had Erythema Nodosum on my legs, chronic hoarse voice, and a nagging, chronic cough that has been going on for several years now. I was told to rule out Sarcoidosis, just in case, so he ordered a chest X-ray, which I had done last Friday evening.

I got a call from the doctor this morning who said my X-ray looks fine, so Sarcoidosis has been ruled out for me at this time.

In the meantime, we switched up my asthma and allergy maintenance medications to see if they can help me with my cough and hoarseness. So far not much has changed, but he told me to call him in a couple of weeks to see how the new meds are working for me.

In the meantime, I'm still nursing my left side and trying not to cough, as it hurts the muscle to cough or move around too much. Oddly, I feel more of an urge to cough lately. Though the productive cough from last month has passed, I'm finding that whenever I inhale, my throat seems irritated and wants to cough. Sometimes I just have to do it, though I try to hunch over or sit down if I can, since that hurts my side less.

Also, I'm still stuck on 10+4 for the Baby Steps workout, since I have skipped many days and haven't been doing sit-ups since I hurt my side. I did do my wall push-ups, 4 arm lifts, and 4 minutes on the elliptical this morning, so I'm trying to keep going and stay somewhat fit. Once my side heals up, I may have to do fewer than 10 sit-ups to start with, but I'll work my way back up again. :)

The Fibro ToolKit

2011-03-17T19:18:00.000-05:00

Are you prepared for everything that could go wrong during a flare-up? Do you have what you need as a Fibromyalgia patient? Do you have a Fibro Toolkit to help you manage your physical and emotional health on a daily basis?

I was only diagnosed 3 years ago, but I've already collected quite a collection of tools and precautions - just in case.

Here's what I have, and what I think every Fibromyalgia sufferer should also have:

A Good Fibro Doctor

It's not always easy to find the right doctor, but if you don't like the one you've got, do what you can to keep looking for and trying new ones until you find one that you can work well with. A good doctor is one who believes you, listens to you, and understands Fibromyalgia and the various ways to go about treating it.

Even better than one good doctor is a great team of doctors who effectively works together to communicate on the various health issues you need treated. If you're not happy with your health care providers, move on.

A Library of Practical and Useful Books

Do some research and invest in or borrow at least one or two good resources to look back at from time to time. Fibromyalgia encompasses a lot of various symptoms and has a lot of overlapping conditions associated with it. It seems it's never the same condition twice! As the fibrobeast evolves and confounds you, having a reliable text nearby may help with figuring it out and perhaps calming it or even explaining it to others.

The books I own are:

Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin J. Starlanyl & Mary Ellen Copeland
The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief by Clair Davies, Amber Davies, & David G. Simons

A Subscription to the Fibromyalgia Network News Journal

Like the books above, there is pertinent information that is great to consult for the myriad symptoms that plague us fibromites. However, the Journal is published regularly and contains shorter articles that keep us updated on new research regarding causes and treatments. The timeliness of this information is extremely useful and well worth the yearly membership fee.

If you can't afford membership, you can still look here for fewer, but still useful, articles - online and for free.

Useful Self-Massaging Tools

My Thera Cane and Knobble are handy for massaging certain spots, but if you're short on money, find yourself a tennis or other kind of ball or two and an old sock or stocking. Put the ball or balls in the sock and tie the end. Throw it over your shoulder and lean agains them on the wall or chair. Or, they work on the soles of feet or other areas where pressure can easily be applied (without straining).

I also see a great massage therapist every two weeks for an hour-long massage (mainly on my back, neck, shoulders, and face) which helps release the myofascial trigger points I have.

Heat Wraps

Though some people like icing their pains, I find heat to be comforting on my painful areas. I have worn out a couple of heating pads already and am currently on my third. It is dedicated (mostly) to my spot on the couch. At work, I keep "Bunny" in a closable leftover container for microwaving. I made "Bunny" using a pair of soft socks, a bag of dry rice that cost less than a dollar, a piece of ribbon I just happened to have, and some hand-sewing. I also have a fancier model that was given to me as a gift. The shape of it lends itself more to a back or shoulder than the curvier part of the neck. But "Bunny" is better for that, especially as hands-free.

Pill Organizers

I have two weekly pill organizers that are different colors. One (white) is for my morning doses and the other (blue) is for my bedtime doses. I have had to take some medications in the afternoons or middle of the day, but luckily those were temporary. For those, I kept a supply in my purse and a daily reminder on my cell phone to let me know when to take my medication. If you have one or more regular maintenance drugs that have to be taken at other times during the day, definitely invest in a third weekly pill organizer or some sort of other effective system to keep track of your meds.

I fill both organizers at the same time, once a week, and make note of any prescriptions that need to get refilled soon. Then I refill anything I need online ASAP so I don't forget and run out. I also have a great system for making certain that I take my pills when I'm supposed to. At bedtime, I take out both my morning and nighttime pill organizers and place them on the bathroom countertop. I take the nighttime meds right away, then put the nighttime organizer away. I leave the morning organizer on the counter until I wake up. I figure the first and last things I do each day are to visit the bathroom, so I have made taking the meds part of that routine.

Effective, As-Needed Medications

In addition to the maintenance medications I take every morning and every night, I keep a small stash (in a traveling, purse-sized container) of various pain pills with me at all times, in case I need to rely on something to save me from disaster while I'm out. I have: pain pills, muscle relaxants, headache pills, antacids and gas pills. I have medication to help me focus for when I need to do well at work but the pain keeps distracting me. I also keep an allergy medication and my rescue inhaler for asthma emergencies. In addition, I have sugared ginger cubes in a baggie at work and at home, in case I feel nauseated.

Zostrix HP, Arthritis Pain Relief Cream
Zostrix is a cream that contains capsaicin. I heard that capsaicin, which is derived from hot peppers, has a natural ability to lower Substance P - the chemical in our bodies that help our brains detect pain signals - with regular use. Since studies have shown that Fibromites have too much Substance P, I figured I'd give this creme a try. I don't use it often, as it heats up the area where applied, and my pains tend to wander too quickly to make use of the long-acting effects to be comfortable. I usually opt for real heat, but use Zostrix when I know I'll be away from heat wraps and I'm having pain flares in more stubborn locations, like my upper back or my hip.

Someone Close Who Can Help You

I am lucky to have a husband who has learned what is most difficult for me and has taken on the burden of doing the more strenuous chores for me, and helping me when I ask. He learns about the aspects of having Fibromyalgia along with me, as new experiences and information come about. Without him, I don't know what I'd do. Every fibromite needs someone they can ask for help and understanding, even if it has to be outside the home.

Fun, Easy Things to Do During Flare-Ups

One of the hardest things Fibromyalgia patients struggle to do is pace themselves by taking frequent rest breaks. When we do, it's nice to have things we enjoy doing to keep our mind off our worries. For instance, I like journaling, and I can do that from bed or my "nest" on the easy chair. There are a couple of books I enjoy reading, too. Then I've got a sketchbook for drawing (though I haven't done much yet), a Sudoku book (comes in handy in the bathroom), and there are lots of great places to read or be silly online if I'm up to being at the computer.

Pets or stuffed animals can also be fun to rest the mind and relief stress. Remember to make sure you have things you can easily do in the middle of the night, for those sleepless hours that inevitably come our way.

WRAP: Wellness Recovery Action Plan

The idea for the WRAP came from one of the two books I listed above (the first one). Bascially, you write out all the things that you should remember to do when you feel a flare-up starting, but probably have too much fibrofog to think straight. Here's mine.

That's about all I can think of. What's in your toolkit? Share your tips!

My Fibromyalgia Story on Fibroduck's "Faces of Fibromyalgia" Blog

2011-03-13T22:01:00.001-05:00

I submitted to Fibroduck a personal account of my transition from normal Benia to the Fibromite Benia I am today. It was published on the "Faces of Fibromyalgia" blog today.

Please click here to read my account.

To submit your story to the Fibroduck "Faces of Fibromyalgia" blog, please include a head and shoulders type photo of yourself and send an email to admin@fibroduck.com.

I'm Going Off the PPI

2011-03-07T15:10:00.001-06:00

I left a message for my GI doctor last Friday because I was getting low on the proton pump inhibitor (PPI) medication and wasn't sure if I needed to continue taking it.

As you may recall, I began taking them to treat a painful bout of gastritis a few months back. I had found relief after taking the medication daily (once each morning). Anyway, I just spoke with the doctor about whether or not to continue taking this medication and was told to try staying off the drug for a while and see how I do. Since my gastritis seems to be under control and my IBS is finally under control at the moment, I'm hoping my body will be thankful (and not vengeful) for taking one less drug each day.

On a side note, I'm coughing a ridiculously lot since last Thursday. I've had an annoying, dry cough for a few years now, but since last Thursday, it got really frequent. As of Friday, the cough seems to have gotten a tiny bit of a rattle, but only sometimes. I assumed I was getting a bug, but because I am not dealing with any other cold or flu symptoms (from what I can tell as a fibromite) I'm wondering if GERD is the next problem. I think getting off the proton pump inhibitor now could be telling if the cough gets worse.

It would be nice to just have some stable health for a while, but with FM, if it's not one thing it's another.

C'est la vie...

Today is my Third Anniversary

2011-02-28T10:25:00.000-06:00

Okay, well, it's not necessarily one I like to celebrate - it's the anniversary of my original Fibromyalgia diagnosis, in 2008. I was first diagnosed with Fibromyalgia by a rheumatologist. As a treatment plan, he put me on Lyrica and then Cymbalta, both with awful results. After that, the young doctor seemed to be out of ideas, so I looked for a more experienced doctor.

I found a doctor who specialized in Fibromyalgia patients, got re-diagnosed (pretty much at every appointment) using the standard pressure-point test, and saw him for a while. He started me on Pristiq to regulate serotonin, and also prescribed sleeping meds to help me sleep. I also had a pain medication at my disposal for managing flare-ups. I made some progress and was glad to have found this doctor. One of the most important things he studied, was a theory that an overabundance of yeast in the digestive tract is the ultimate cause of Fibromyalgia symptoms, and could be better managed or even cured by using anti-fungals and maintaining a strict "yeast-free" diet for at least 6 months, then as needed.

I tried this treatment for 3 months without cheating, because I was very curious to see if this treatment would be effective for me. This meant I could have: no bread, no beer, no sugar, no fermented products, no preservatives or artificial sweeteners, very limited fruit and dairy, and pretty much nothing pre-packaged unless it was whole grain or free of all the other forbidden stuff. I basically ended up eating home-chopped salads with lime juice for dressing, and Triscuits (whole wheat) for lunches, and clean meats and veggies for dinners. I'd snack on veggies and have fruit for dessert. Cheese was a special treat.

Basically, I lost 20 pounds in 3 months, I felt worse painwise, and I was not happy about being a social pariah because I couldn't go out to dinner or eat "regaular" foods with my husband or friends anymore. I was skinny and miserable. The doctor saw my ribs and urged me to quit the diet and eat some ice cream or something. Not long after that, the doctor closed up shop and I was looking for a new fibro doctor again. (I'm not sure I was the cause of the closing up of the shop, but I do wonder sometimes.)

I found a neurologist who works in a pain clinic setting. He is very familiar with Fibromyalgia as well as other chronic pain conditions. This is the doctor I currently see now. He is a great listener and we manage my treatments together. I ask lots of questions, tell him how my health has been between visits, and tell him what I consider most important about my symptoms at the time. If necessary, we change up medications or talk about non-medical treatments that could help. I suspect he doubles as my psychiatrist, as he's usually typing a lot of information as I talk. Thus far, it's been a good match, I think.

So, today, I reflect on my journey from undiagnosed to having been officially diagnosed with Fibromyalgia for three full years now. Back then, I had just learned the word and all the packaged symptoms it entails. I have tried many types of treatments and have experienced many ups and downs. I've learned lots about what it means to have Fibromyalgia and deal with its unpredictable nature. I've also connected with many others like myself through online groups and made great friendships I probably would not have, otherwise.

It's been a relatively short journey thus far, but I have already made much progress. I'm hoping that the remainder of my journey will only get easier with time and experience.

Special thanks to everyone who has contributed to my learning and understanding

along the way. This includes doctors, researchers, nonprofit organizations and their publications, support groups, all my fibrofriends, and last but not least, my friends and family - especially my husband Don - who have been supportive and understanding of my body's changes, even before I could be. I am grateful for you and the help I get from you every single day. I am able to deal with this only because of you.

THANK YOU!

Tomorrow I Move On to "Baby Steps 10+3"

2011-02-26T11:01:00.000-06:00

Baby Steps 10+3 = 10 wall push-ups, 10 sit-ups, 10 leg lifts (using Don's weight bench), 3 arm lifts (each), 3 minutes on elliptical machine.

I've spent about 3 weeks, off and on, on the 10+2 stage, because I was having so much abdominal pain, diarrhea, and feeling like a Mack truck wreck for much of that time. BUT, since I've finally rebounded out of that IBS flare (until I find out otherwise, I'm considering it a severe IBS flare), I'm right back on track with my workout routine, and I think it's been very beneficial to me overall.

Although the weight of the abdominal trouble has finally been lifted and I am still kind of high on the feeling of NOT being in abdominal hell on a constant basis, I do still have Fibromyalgia and the pains and symptoms that go along with it.

Pacing is still an issue: I have spasms in my back if I sit too long at work without getting up and moving around, and the bones in my left arm and both legs have been very achy lately. I am dealing well with these symptoms lately, because, as I mentioned, I'm riding the high of finally being relieved of the digestive wreck that has been taking over my life since August. But I acknowledge that I'm still a chronically ill person and need to take special care not to forget and cause an unnecessary flare up.

So, I am maintaining my promise to myself to continue to slowly progress with my strength and endurance, so I can do more without triggering a flare, feel better about myself, and hopefully (eventually) manage to lose of some of this extra weight I've put on since last year. By going slowly, I've been able to feel good about achieving my daily goal every day, which is a nice feeling, and I've been able to take care to keep within my own abilities without overdoing things.

So, I've moved up from 1 wall push-up and 1 sit-up per day, back in November, all the way up to 10 each every day. After that, I added other types of activities to exercise other muscle groups and add stamina. So, I maintain the wall push-ups at 10 each day and the sit-ups at 10 each day, but now I've added leg lifts (with a very light weight), arm lifts (again, using a very light weight), and minutes on the elliptical machine that I used to use so much more before I got sick.

I've started at 1 each for these three new exercises, but a few days ago, I thought I'd see if I can do 10 of the leg lifts, since it felt too easy to do just 2 every day. The next day, I woke up with both legs feeling this awful ache, deep in the bone, all the way from the hips to the toes. I couldn't even lie in the bed comfortably, no matter how my legs were positioned. BUT, I made it through the day and am doing better. No real flare-up. I'm still doing 10 leg lifts every day now, while maintaining the gradual progression on the arm lifts and elliptical minutes.

Tomorrow, I am starting a week of 10+3. It's been several weeks since I've been able to progress much (other than the crazy step-skipping I did with the leg lifts), but I'm excited to keep increasing and maintaining. I feel stronger and better able to deal with the daily routines than I did before starting the program. I can walk at a pace that doesn't scream "granny" and hold up a crowd (as badly as before) and can more easily handle the daily routine as well as the variable tasks or events that are added to the day now and then.

I'm kinda proud.

In fact, sometimes, after getting all the exercises completed, I give myself a little pat on the back, just to make sure I remember to feel good about something as I start my day. No matter what else happens, I'll know that I, at least, was able to get my workout in.

Success! :)

Belly Update - Colonoscopy Canceled

2011-02-21T12:33:00.000-06:00

Good news: I think the new Rx is helping me! I have been feeling much better since Saturday and haven't had diarrhea since before starting on the Xifaxan. I left a message for my GI doctor, asking if the colonoscopy is still necessary, now that I'm feeling just about 100% better. I've been on a clear liquid diet today, just in case I'm still going in tomorrow. The real prep would start at 2:30pm today (chugging the laxative stuff), so I was anxious to hear back from the good doctor.

So it's almost 12:30pm and my doctor just called. He is as thrilled as I am that I'm doing so much better on the medicine, finally. My colonoscopy for tomorrow is canceled for now (and I get to go to work tomorrow instead of taking another sick day for the testing).

I'll finish the meds out (two weeks' worth) and see if I'm still okay then. I'll report to my doctor how I'm feeling then and we'll go from there. If a colonoscopy or other testing becomes necessary then, we'll reschedule something then.

Hurray! I can eat!

Belly Update - Colonoscopy Scheduled

2011-02-16T11:13:00.000-06:00

Firstly, I'm at home, taking a sick day today because I'm hurting, nauseated, and feeling worn out.

I called my GI's office again today, begging for the test results and he finally called back to say that all four tests came back negative. The news is, of course, bittersweet, because that means we haven't nailed down the cause for my pain and diarrhea. He mentioned that inflammation in the colon may be a possibility, and that this is still possibly IBS - it can get as bad as this.

The next step is to get a biopsy of the colon tissue via colonoscopy to take a look at what's going on inside. I went ahead and scheduled it for the earliest day I can get it done - Tuesday at 11am.

In the meantime, the nurse is faxing a prescription for a drug that usually helps with IBS called Xifaxan (aka Rifaxinin), along with detailed instructions for my colonoscopy preparation to my pharmacy. The bad part is that this drug is rarely covered by insurance. I checked online with my insurance and it is not covered. This could cost me a couple hundred bucks. I also need to buy Miralax, Gatorade, and Magnesium Citrate for the colonoscopy prep.

Same Day Different Shit?

2011-02-10T18:27:00.002-06:00

I just got back from my gastrointestinal doctor appointment. First let me back up a bit.

Back in August, I started having some mild abdominal pain, right around the time I also developed a sore throat (after Don had a cold or something for a week). I figured the bellyache was just part of the virus. The throat was better in a couple days, I never really got a full cold or flu, but the bellyaches continued, gaining intensity each day. About two weeks later, I went to the emergency room to check for anything serious.

Many weeks, doctor visits and tests later, I have learned:

1. that my gallbladder is only working about half as well as it should be (it's not contracting) though no obstructing stones were found, and

2. that I have gastritis "with erosions" that is not caused by the usual suspect H. Pylori bacterium.

As the weeks and months went on and the pain continued, I started looking into various theories about what could be going on in my body. I've pretty much gotten nowhere with that. All I knew was that I kept getting pain in my upper left abdomen, usually with episodes that liked to happen around 2:30pm for some reason, among other times of day and night.

More recently, I found a new GI doctor who prescribed a proton pump inhibitor (acid reducing drug) to see if it would help the pain by easing the gastritis. I was delighted to report that after three weeks on this drug, I felt super! I thought the ordeal was over with and celebrated a bit. (When you have Fibromyalgia, any bit of pain relief is an occasion worth celebrating!) I reported the success to my doctor via phone and he instructed me to continue the prescription for another month. If I continued to feel better, I could start weaning off it then. Alas, the bellyaches were only gone for about a week or two before they came back, but slightly different than before.

Oddly, I believe it was the day after I'd called my doctor that I started feeling abdominal pain again. This time, though, it was more in the general, lower abdominal area, and came with a widely varying array of "interesting" stools as well. I called the doctor again to let him know how I was feeling and he called in a new prescription for me to help stop my guts from having spasms, which is what he suspected was going on now. He further explained that, sometimes, when a patient has upper abdominal pain for a long time, even when it is relieved, the other abdominal areas can become more sensitive to pain. Since I'd been diagnosed with IBS in the past, he wanted to treat with a best guess strategy and see if it would help.

That same morning I discussed things with my doctor and he phoned in my prescription, I picked it up and started taking it before meals and before bedtime. By some odd coincidence, I also started having the wateriest stools I've had in years... every day, many times a day, and even waking up at night with this. Currently, I'm dealing with a constant abdominal pain at a level of 3 or higher most of the time, escalating up to about level 8 or 9 several times a day. I'm always in pain and I have lost my appetite a bit and started eating a lot less. (Plus, when you have painful, crampy, diarrhea for a long time, you quickly learn that if you don't eat, you poop less.)

So anyway, now back to today's visit. I saw my doctor and we discussed my progression of troubling symptoms. He says the proton pump inhibitor I'm taking for the gastritis can make some people susceptible to bacterial infection in the colon. Before jumping to antibiotics, however, we need to confirm that this is the case - with everyone's favorite lab testing method: the ever-popular stool sample. Oh boy. My nasty smelling "poison" poopy will be tested for four different kinds of infection, including the one that tends to occur with the drug I'm on. If it comes back negative, he will go with the next best approach, or possibly have me do imaging or other testing.

Guts problems are hard to diagnose. A lot of things can cause abdominal pain. Some of those causes are serious and others are fleeting. Many bacterial infections just run their course and die off after a time, too. It all depends on the test results.

While I wait for test results, I was instructed to take probiotics again (I'd stopped months ago, on the advice of a previous doctor before we knew of the gastritis), start taking some Pepto-Bismol for a couple days and see if that helps. If it doesn't, I was told to switch to Imodium.

I'll report news here once I know more.

10 + 2 > 12: Baby Steps Modification

2011-02-07T13:29:00.000-06:00

So it's week 12 of my "Baby Steps" workout regimen. I've been keeping up with my obligations for the most part, despite being in miserable IBS hell for the past few weeks and in gastritis hell for several months before that. I've only missed 1.5 days of exercise so far (yesterday I only some of what I should have for the day). I think that deserves horn-tooting.

When I reached week 10, I realized that I was having more and more difficulty getting the 10 sit-ups done in one session, so I discussed possible adjustments to my plan with my husband, Don. What I came up with was a neat way for me to maintain my regular progression while adding other types of exercises to my workouts.

So here's what I'm doing each day this week:

10 wall push-ups
10 sit-ups
2 minutes of ellipical exercise
2 lifts of my 5 lb. weight for each arm
2 leg lifts using a very light weight on Don's weight bench

Next week, starting on Sunday, all the 2s above will be 3s while the 10s will remain at 10 until I'm comfortable adding any more to those exercises.

What I like about the adjustment is that I'm still working muscles but I'm also doing some cardio to help improve my stamina, exercise my heart muscle, and keep my blood flowing.

I am frequently tempted to skip the workouts lately because of pain and discomfort (imagine having belly cramps and deciding to do sit-ups), but I have convinced myself that I'll feel better if I do the exercises than if I skip them. I feel more like a winner than a loser this way.

On top of the great feeling of accomplishment I have for getting this far, i weighed in this morning a pound or so lighter. It may very well have been due to a loss of appetite lately, as I have not been able to stomach eating much lately, knowing that I'm going to see my meal again in several hours, along with some nasty increased cramping and distress. If I don't eat, my guts don't seem to complain as much. If I keep working out, though, I'm hoping to build back more muscle. That is my first goal. Weight loss will come later.

What kind of exercises are my fibromite friends out there doing? Do you have any tips you'd like to share with me and my readers? Please comment below.

Abdominal Pains Getting More Complicated

2011-02-03T13:29:00.000-06:00

I called and spoke with my gastrointestinal specialist doctor today. We discussed my new, near-constant abdominal pain with intermittent increases in pain from time to time.

Because it is in the lower abdominal area, he does not think this has anything to do with my bad gallbladder or my gastritis, but that my colon is being spastic (colic). He further explained that sometimes having pains in upper abdominal area can lower the pain threshold in other abdominal areas.

He prescribed an anti-spasmotic prescription for Hyoscamine for me to take in addition to my daily Dexilant for the gastritis (aka dyspepsia). I am to take the Hycosamine a half-hour before meals (I can skip the lunch one) and at bedtime. It is a dissolving pill that is placed under the tongue and can be taken without water. Common side effects can include dry mouth, dizziness, and constipation.

He said that if any of the following occurs, to call him or go to E.R.:
- blood in stool
- fever
- constant pain

Since my pain is already near-constant or constant, he suggested I see him next week Thursday to discuss my situation and consider the need for any further testing. Next Thursday is an important release date at work, which makes this tough for me, but he's out Friday. I made the latest possible appointment with him on 2/10 and emailed my boss, apologizing for the bad timing and inviting him to discuss this with me. We'll see how it all goes.

I'm stressed. :(

Bellyaches: I'm Not Out of the Woods Just Yet

2011-01-28T16:37:00.001-06:00

Just when I thought my gastritis was healing nicely and behaving well, the bellyaches started up again, even though I'm still faithfully taking my Dexilant every morning. The ironic thing is that just last Monday, I called into the wonderful gastroenterologist who prescribed the Dexilant for me and reported how great I've been feeling. He told me to keep taking the proton pump inhibitor for another month, and if I still feel well, to start tapering off by taking it every other day, then every three days, etc. and see if I can get off the drug. He warned me that, unfortunately, most patients do start to see a return of symptoms as the dose decreases, so I should make sure I note any changes in how I'm feeling.

But I haven't even started decreasing and I'm starting to feel kind of icky again. Luckily, I haven't had the dramatic bloating and cramping episodes in the past few days (thus far), but I've awakened with moderate abdominal discomfort, sometimes with headache, sometimes with nausea.

It started with a restless night on Wednesday morning. I have been able to sleep relatively well (for me) about a month before this all started up again. But Wednesday morning, I felt miserable and had to call in sick. I had a busy day planned for Thursday and went ahead with it all, despite feeling worse than my usual level. And today I managed to drag myself to work despite feeling a bit distracted with pain and discomfort of various kinds. I have plans to see my parents tonight, too. Even though I am not really up to a social visit tonight, I'm going to force myself through it because they haven't seen me since Thanksgiving and are begging to see me.

The worst part about the bellyaches being back is the worry that the gastritis isn't healed, or that the reason I developed gastritis has not been addressed and perhaps it's getting more agressive to compensate for the lower acid levels from the Dexilant. I still worry about that faulty gallbladder of mine and whether it's the cause or just another effect of something else going on. Will I need to change meds? Will I have to start thinking about the possibility of removing my gallbladder again? The mysteries of my own body continue to confound me.

In the meantime, I need to cope. I feel like I've dropped the ball on my coping mechanisms. Am I forgetting some lesson that I'd learned earlier? I am still keeping up the baby steps workout (I'm on week 10 now!) despite my symptoms. Perhaps I need to remember how to pace myself again. I have been busy for the past couple of weeks with extra commitments and things. Maybe I need to take the weekend off and try to relax a bit so I can recover for Monday.

What a life!

Week 8 of Baby Steps

2011-01-11T09:21:00.001-06:00

I'm on week 8 of the Baby Steps workout routine and still making it, despite crazy fatigue and feeling blah.

Here is a photo of my little notes (along with some of my friends: Wellington the bear, Chiki the monkey, and "the Lion" who gets hidden by Don or me for the other one to find) that I posted on my bedroom mirror to remind me to do my exercises each day. I add an increment each week, draw a large number, write the date range for the week on top, and just stick it on top of the others. (Yes, it's getting thick.)

I'm also noticing a few quirky things that may or may not have to do with my increasing my exercises.

When I turn over in bed or try to get comfortable in a new position, once I settle, I notice I get these muscle twitches in my torso. This is the first time I've been able to associate any of my muscle twitches to anything I've done or that happens to my body. I still get the random twitches everywhere else - arm, eye, lip, leg, toe, butt - but when I am turning around and settling into the bed or the couch, I am now noticing that almost every time, I end up with muscle twitches that occur in the torso area, usually on the sides of my stomach.

Also, the heart palpitations are back. I used to get very infrequent episodes of my heart pounding and beating incorrectly (tachycardia) that sometimes lasted for hours. When I tried to capture an episode or two on a heart monitor I wore for a month last year, (after seeing a heart specialist for this,) nothing happened, so we don't know exactly what kind of issue is occurring. However, over the years, I've had my heart checked out via ultrasound and even did a stress test and everything turned out okay, test-wise, so apparently these are benign episodes, though they can be very distracting and unsettling if they go on long.

So what I'm noticing recently is that when I wake up or for no apparent reason sometimes, I notice my heart beating incorrectly and quickly for just a few seconds before returning to normal while I concentrate on breathing and focus on a normal heartbeat. These are occurring daily or more frequently these days, and I'm not sure if it is coincidence, or perhaps my trying to increase my muscle mass is causing some sort of electrolyte or other chemical imbalance or something, due to the needs of my muscles. Perhaps I'll do some research and see if a supplement can help me with this.

Another thing going on lately is lots of dizziness and feelings of presyncope, especially in the mornings and while moving my head or even just my eyes. I get myself to work and step off the elevator to get to my desk. All the while, each time I turn a corner, I feel like I might faint. I've never fainted, so I don't know if there's any danger of actually fainting, but the feeling is there. Needless to say, I'm not myself until my body settles down a bit and I can focus on other things.

At any rate, I'm still moving forward on my exercise goals. Hopefully, once I get stronger, I'll have increased my metabolism and built up my endurance a bit. Then I can get serious about losing some fat and maybe getting into some of my smaller pants sizes again. Dare to dream...

No More Bellyaching!

2011-01-03T17:02:00.000-06:00

I'm thrilled to report that I seem to be done having the regular bellyaches, cramps, and bloating that have been going on since August of last year. DONE! I have my new gastroenterologist to thank, my niece for recommending him to me, and the drug that the doctor prescribed for me - Dexilant. It's a proton pump inhibitor that is reducing the acid in my stomach, which appears to be at least a contributing factor in both my gastritis and aches.

As a bonus, my recent throat-clearing and coughing issues seem to be somewhat more manageable, though not cured completely. They are at least more productive than before. I'm still oddly very tired most days, even though I try not to do much if possible, but without having to deal with the belly episodes every day, I feel very grateful and much better. I'm hoping the trend continues and that talk of any gallbladder removal surgery becomes moot.

The "Baby Steps" Workout

2010-12-29T09:22:00.000-06:00

I just did 6 wall push-ups and 6 sit-ups. This is week 6 of my "Baby Steps" workout regimen. Each week, I add one more incremental wall push-up and sit-up to my daily quota. This way, I don't overdo it, my body can handle the very gradual change, and I get to enjoy the (eventual) benefits of doing mild, muscle-building exercise on a daily basis.

Back in "the before time" (before I had Fibromyalgia) I started this workout regimen for myself to build up my strength and stamina, little by little. I did regular, floor push-ups instead of wall push-ups back then, too. I got as far as 22 per day in 22 weeks and was so proud of myself for being able to do 22 push-ups at once! Then I got an awful flu bug that made me violently ill and made me lose 10 pounds of water in one week. It was not fun, to say the least. Needless to say, I was unable to continue my workout routine during my week of constant fluid expulsions from various orifices. My gradual return to health after that week also was not inspiring me to get back on the wagon so I had essentially quit and forgot about it all while recovering... until now.

I've been especially ill for the past 5 months now with what today appears to be gastritis and biliary dyskinesia, along with daily headaches on top of the bellyaches, bloating, cramps, and general discomfort. I have spent many days home from work, vegetating in bed or on my easy chair ("the nest" as Don likes to call it), trying to gain some comfort or distract myself from my symptoms with journaling, reading books, watching television, or playing computer games or blog reading. I have also been very unhappy with my recent thirty-pound weight gain and all the problems associated with that. While lamenting that I was stuck between a rock and a hard place about being unable to lose weight or exercise for my own good, it finally came to me that I had already invented a great way for a Fibromite like myself to sneak in something good without upsetting my body too much and causing a flare-up. I'm a genius!

So, with some minor adjustments from my original version, I am back on the slow, rickety, but reliable (little red) wagon (being pulled by a baby goat) of gaining back lost muscle mass, losing some weight by burning calories and increasing my metabolism, feeling a daily sense of accomplishment and progress, and looking forward to less frequent flares, better tolerance for activity, and reducing stress. Although it will be a slow journey to reach these goals, I am determined to remember the lesson I learned the first time around and make sure I stick to the program no matter how I'm feeling. It's a relatively small amount of time and effort, especially in the first week, so I know I'd feel much worse if I were to skip. (How lame would I be to determine I can't do one single wall push-up and one single sit-up today, right?)

So, I'm very proud to report that I've accomplished 5 full weeks of daily baby steps workouts, in addition to any other exercises I might happen to squeeze into my day while I'm feeling up to it, like walks and climbing stairs and doing chores. I'm not going to fall off THIS wagon, damn it! That would be so, so lame of me. I will continue and just enjoy the slow, scenic route to feeling better.

Look at Me; I'm SUPER*

2010-12-13T08:04:00.000-06:00

* SUPER to a Fibromyalgia patient is not unlike a regular-sized person being called a "giant midget" in some ways, but it is a temporary and fleeting phenomenon and is an event to be celebrated as a major victory.

Today I woke up, earlier than I usually like to, and I was actually ready to get up and start the day. That's rare for me, as I am usually really ready to ~~sleep~~ lapse into a coma when morning comes. This was my first clue that something was different. Besides, it's Monday.

So I got up, all bright-eyed and bushy-tailed, and announced to Don my sudden realization: "I don't feel terrible today!" I wasn't feeling cured, by any means, just not as awful as the past few weeks or even months. Hooray!

I'm taking a daily antacid prescription first thing in the morning these days, to see if it helps my gastritis and abdominal pain problems I've been having since August. I am supposed to wait 30 minutes before eating breakfast after popping this pill, so I busied myself while waiting.

First, I got my new "baby steps" workout regimen out of the way for today. I'm on week 4, which means that I need to do 4 wall push-ups and 4 sit-ups every day this week. I'm adding one increment each week, and hope to build back some lost and much-missed muscle. Doing those took only a couple minutes of my time, so I went to the basement and hopped onto my elliptical machine for a bonus 4-minute (slow) cardio workout. It was not too bad and I'm feeling very proud of myself for having done it, since I don't usually get enough exercise. Yay me!

While downstairs, I noticed some laundry in the dryer, so I unloaded into the basket and - get this - I carried the clean laundry upstairs into the bedroom for folding. I know, it's unheard of. I haven't been able to deliver a load of laundry up or down the stairs in months! I brought up the basket and told Don "Look at me; I'm SUPER!" with a bit of a dumb grin on my face. He immediately warned me, "Don't over-do it." He's right, I need to remember to curtail my enthusiasm and pace while I'm feeling well, so I don't feel like crap tonight or tomorrow. Thanks, Don.

After folding up the laundry, I am ready for breakfast and munching away on my cereal as I type this post. I'm hoping my day continues to be at least a good day, if not great. Hope you're having a great one!

The Vicious Circle of Rare Disease Diagnosis

2010-12-02T09:56:00.001-06:00

Warning: I need to rant a bit here.

When you have been diagnosed with a multitude of health conditions that includes Fibromyalgia Syndrome, as I have, you may find the need to dig deeper and see if there is a more reasonable diagnosis lurking behind the myriad symptoms - something that ties at least some of the symptoms together and makes more sense.

After being diagnosed with Fibro in February of 2008, I thought I would find some relief, thinking "okay, we know what this is, now we can treat it." Today, almost three years later, I'm not feeling much relief. Although having some diagnosis for all the things that seem to be malfunctioning in my body was at first comforting, I have realized some things.

Fibromyalgia is merely the name of a syndrome, which means it is merely a short way of naming a collection of symptoms that occur together. It isn't actually classified as a disease or condition. Saying one has Fibromyalgia is just a way of saying that a certain (long) list of non-fatal symptoms is occurring in the person's body. Having a doctor declare to me that I am experiencing a collection of symptoms is really not very helpful, really. Tell me something I didn't already know! There is no way to treat the core problem because the core problem is simply not yet known. Treatments currently focus on relieving whichever symptoms cause the most distress to the patient, and many are ineffective or only mildly helpful at best.

Many doctors tend to shy away from things they don't understand. The medical journals and conferences tell them what the official word is on how to diagnose and treat patients, and they tend to follow protocol. That's good much of the time, but sometimes this pattern is not very helpful to the patient. If it looks like a duck and sounds like a duck, it's probably not a horse, right? But when patients have symptoms that greatly affect the quality of their lives, they want a little more than standard protocol from their doctors. Why are we dealing with so many systemic problems? Why does the list of symptoms continue to grow despite our best efforts at improving them? Why does coping reasonably with these symptoms while still searching for real answers seem to spell "hypochondriac" to doctors who hear our best guesses for investigating conditions with similar symptoms and decide we aren't sick enough to pursue those tests?

Here's the thing. Once upon a time, all the health conditions that are known today were unidentified. Over the centuries, humans have observed and recorded health problems and treatments. When patterns emerged, conditions were named. As the collection of health conditions amassed, new, albeit rare, conditions began to be named and documented. You know the saying "there's a first time for everything" right? It's true for named health conditions, too. Every condition we know about today was once new... and rare.

We have always had a collection of rare health conditions. Only a very few of the patients seen have been diagnosed with these rare conditions. Some of them have become less rare as more was learned and diagnosing methods were narrowed down. Today, we still have a great many "rare" diseases and conditions out there. Statistically, very few people have been diagnosed with these conditions - but there are some out there.

So, when I ask a doctor to consider the possibility that I may have a certain health conditions and the reply is "no, it's not that; that's very rare," I propose that that reason for coming to a dead end on figuring me out is bullshit. Doctors: If you fail to test people for conditions, you will have contributed to the "rarity" of those conditions by reducing the statistics - the very reason you have provided to me for failing to pursue investigation of the possibility that such a condition could make sense of my problems.

Another reason I have been given was that if I had such a condition, I'd be much sicker than I am. Again, logic fails. Whatever happened to the great advice of getting diagnosed early for conditions, so it can be treated and possibly cured before it progresses to a point where nothing helps? If I'm "not sick enough" to be considered for a condition, does that mean that doctors don't want to diagnose early? Will they consider the condition if I wait until I suffer much more? Is this humane??

There are some diagnostic tests that cost a lot to do or require much more reasoning and thought and time to put together, and I suspect that these are the real obstacles I'm fighting. If this is the case, I'm thoroughly disgusted. I am trying to live my life as best as I can while dealing with at least a dozen symptoms at any given time. Meanwhile, I'm working to improve my quality of life and reduce the burdens on others by searching for meaningful reasons for my body's failings. I'm motivated to do the research, though my medical knowledge is greatly limited. I need the help of medical experts to find these answers, yet the true rarity in medicine today is a doctor who is actually willing to empathize and help me find those answers.

My plea to doctors is this. Don't dismiss my hypotheses with the rarity excuse and don't use cost or effort as a reason either. My body is breaking down and I need a better diagnosis than a syndrome. Cost and effort of investigation should not play a part in my health. I need more effective treatments and I want to know if defects in my DNA or blood or other body parts could be the missing link in what I'm experiencing. If you don't want to help me improve my health, I don't need you at all. If you don't know the answers, call on a colleague who might. Don't discard me. I'm a human being. I want to live well and I want others like me to live well. If you were the one in my place, would you approach things differently? Think about it.

Bellyaching and Stuff

2010-12-01T04:49:00.000-06:00

On November 12th, I had an EGD performed. Gastritis was detected, but no ulcers or other abnormalities, and a biopsy test revealed no H. Pylori is present. In the absence of any other clues, including no gallstones and no gallbladder inflammation or infection, the GI performing the EGD warned me to ease off the NSAIDs (like Aleve, which I use only for more severe headaches/migraines and very rarely as an alternative pain reliever for hip pain or joint pains that may have inflammation) and consider gallbladder removal if my pain episodes continue. He didn't seem very tolerant of my many questions, despite the fact that my case is not clear-cut for gallbladder removal. So I sought out another GI for a second opinion.

Last Monday I brought all my test results and questions to the new GI and he was much more helpful to me. He listened to all of my symptoms and concerns and agreed with my opinion that gallbladder surgery seemed not to be the clear answer to my problems. Not only that, he actually commended me for being "proactive" about my own health and bringing all my documentation with me. This is how doctors should be! (Special thanks to my niece for recommending him to me.)

Anyway, his best guess for a diagnosis right now is functional dyspepsia, which he explained can be quite common for people who also have IBS or/and Fibromyalgia. It is not the same as IBS, which I have dealt with before, but much like IBS, it is a condition that turns out can be difficult to live with, but is not likely to cause permanent damage. He is having me try some acid reducing medication (Dexilant), since my pain seems to be more on the stomach side rather than one the gallbladder side of my upper abdomen.

I was also given a pamphlet called "Gas and Flatulence Prevention Diet" which discusses foods that can cause gas in some people, and the science of bloating, which can get ridiculously severe during my pain episodes. There is a breakdown of various foods by groups that can be problematic, but each person is different so finding out if any of them make my problems worse is going to take some trial and error. The doctor suggested I try to eliminate one food or food group at a time and see if there is any change either with elimination or returning it to my diet. He made sure I understood that he was NOT suggesting avoiding all the problem foods at once, or else I'd have pretty much nothing left to eat. Looking at the list, I see why. It seems the only food group that isn't listed as a potential troublemaker is lean meat. I'm documenting my diet and symptoms, so I can look for new patterns I may have missed.

Lastly, he suggested that I try to eat smaller, more frequent meals, avoiding large meals. The reasoning behind this suggestion is that some people, especially sensitive folks like us fibromites, don't tolerate the sensation of the stretching of the stomach well, and it can feel painful. To minimize on the stretching, I could try grazing little by little throughout the day. It's hard to have half a meal here and there, especially if you want something hot, but I understand the logic and am glad he gave me so many options and ideas with explanations.

He left me with one last bit of advice before my next appointment: find a way to cope with stress and my annoying symptoms so I don't slip into a constant state of worrying about the next flare up. I believe he was talking specifically about the abdominal pain, but I know this is also important to keep in mind for the rest of my Fibromyalgia symptoms and life in general. I do what I can with journaling, blogging, and reaching out to others in need, knowing I won't always have it all under control. There are days when the symptoms just pile on and I get downright cranky or fed up, especially when I have to miss work and get behind on my duties at the office, but the reality is that I'm stuck with much of this bad luck and need to buck up and do what I can to find my own happiness wherever possible. I'll definitely keep working at this.

HIDA (Hepatobiliary) Scan Results - Not Good

2010-11-11T13:59:00.001-06:00

As you may recall from this post, I've been dealing with some mysterious, intermittent abdominal pains since August 9th of this year. At first, it was just a discomfort and I blamed a virus I'd apparently caught, since I had a sore throat for a few days after my husband got sick. However, the pains continued and I couldn't make heads or tails of the cause or triggers.

On Friday, August 20th, I was at work when a particularly painful episode snuck up on me that afternoon. I headed to the Emergency Room. The tests came back mostly normal, but the abdominal ultrasound revealed "possible sludge" in my gallbladder, which my internist doubted could have anything to do with my particular kind of pains. The gastroenterologist I saw on his recommendation had me try skipping my probiotics for a while. When that didn't work, he ordered a HIDA scan to check my gallbladder and liver functioning, as well as an EGD to check things out, since my blood and urine tests revealed nothing.

Meanwhile, per Don's suggestion, I had stopped drinking the water and coffee provided in my office by my work. Our building was built in 1976 and I noticed a long time ago that on Monday mornings, the water from the kitchen sink really stinks, even after washing and drying my hands. Our drinking water is UV filtered, and doesn't stink, but I've learned that UV doesn't remove all contaminants from water. I also noticed that I wasn't having episodes on the weekends or on days when I'm not at work, which we both thought was a strong case to avoid SOMEthing at work.

So, as of Wednesday, October 27th, I believe, I have been avoiding the work water (I bring my own supply in a thermos), and for the most part, I've been without my afternoonly abdominal pain episodes (that start around 2:30pm or so). I started looking into possible contaminants that may be affecting me, though apparently not all of us in the office are doing as poorly as I am. I'm open to the possibility that my body has some defect that makes me especially susceptible to problems. At any rate, I brought this list of possible drinking water contaminants and their health effects to my fibro doctor and told him about the absence of abdominal pain episodes while not drinking work water. His immediate suspicion was excess copper from old plumbing in the building, possibly causing problems in my body. He urged me to discuss the problem with my work and get the water tested.

(He also suspects formaldehyde in the air (from old insulation) or some other air contaminant that could be contributing to my daily voice degradations that also happens only on days I go to the office. But that's another story for another day.)

I brought my concerns to my human resources manager and urged the company to take some action to find out if the water is safe - not just for myself, but for the entire office. She agreed to look into it.

In the meantime, last Tuesday night, around 5pm or so, I was in the office, both shivering and sweating at the same time, wondering if I'd caught the flu or was having a fever for some reason. I went home to rest and still felt awful in the morning, so yesterday I stayed home, still unsure what's going on. I even had to run to the bathroom for fear of vomiting, but it wouldn't happen. Then, oddly, for the first time after a couple weeks now of not drinking work water, my abdomen was in severe pain. I couldn't even straighten up to walk. I was also starving, so I fixed myself a healthy lunch salad and tried to rest a bit.

Well, yesterday was also the day I got a call from the gastroenterologist's office regarding the test results from my HIDA scan. I expected to hear that all was normal, especially since a nurse was calling to report the results (and not my doctor), but she said my gallbladder isn't functioning very well at all. My ejection fraction was measured to be 16%, which is less than half of a healthy gallbladder - 36%. She also said that I should have my gallbladder removed because of this. I gasped. I was so shocked to hear all this. She couldn't tell me why my gallbladder contractions are not effective. I had to have another ultrasound just before the HIDA scan to ensure I didn't have gallstones, so I assume I still don't. However, nobody reported about that test. I asked for a copy of the test results to be mailed to me so I can see all the details.

While I wait, however, I did a search on copper and gallbladder and found that excess copper in one's system can cause a gallbladder to become ineffective. Not only that, too much copper in one's system can cause all sorts of damage, including liver problems and neurological symptoms. Wilson's Disease also came up a lot in my research. It's a hereditary disease that causes the patient to be unable to rid the body of excess copper, and if left untreated, can be fatal.

I decided I need to understand what's really going on here. Is my gallbladder just faulty for some reason, or is something causing it to fail? Is that something too much copper? Is this copper coming from drinking water? Can I treat this, or do I really need to remove my gallbladder? Will removing my gallbladder solve my problems, or only remove one of the symptoms of my bigger problems? What the problem stems from brain damage from my concussion? Is there any way to find out if that's the case? Can anything be done about that, if that's the case? Will anything else go wrong if that's the case? Is any of this related to my other symptoms, like the new Erythema Nodosum on my legs?

I sure hope medical students are required to take some detective classes in med school, because I require some deduction and thinking to be done. I'm not willing to go under the knife so easily. I've read that up to 40% of patients who have had their gallbladder removed continue to experience abdominal pain and nausea.

I would love to have an easy, cut-and-dry diagnosis that makes sense and for which removal of my gallbladder would solve my problems, but I'm not convinced of this yet. Stay tuned as I learn more about this all. If you have any experience with any of this, please feel free to share.

Making Molehills out of Mountains

2010-11-04T11:18:00.000-05:00

I've been dealing with many symptoms lately - some old, some new - and have been a bit run down. I'm noticing little tasks and chores are piling up on me while I postpone them to rest or try to get comfortable for a while. I have notes about various things I jotted down while away from the place where I need to do them, reminders about stuff I need to do when not in the middle of doing something else, etc. The result is a mountain of undone stuff that stares at me every time I sit down at my desk full of papers.

This is about the time I remembered to jot down one more note for myself: "Do just one thing." Rather than bemoaning the fact that I am so behind on my pile of chores, I am going to rejuvenate myself by picking one task and getting it done and off the heap. If getting that one thing done creates a productive inertia and I am up to doing more, even better. But the pressure is off for the session after the first task is done.

Last night, after I put up the note to remind me to take my own, good advice, I filed a few documents that have piled up in my inbox at home. It only took me about five minutes to do, but it felt great to finally get that task done. Once that was done, I checked one of my to-do lists for something quick I could squeeze in before dinner and got that done, too. Whoohoo! How could I have forgotten one of my best ideas so easily? Let's just blame Fibro Fog for that. ;)

When you're in pain, procrastinating a task or two is okay - to a point, but if it becomes a habit, your self-esteem can feed into a vicious cycle of feeling depressed and having more pain. Conquer that depression by doing one, easy thing that's been nagging at you for a few days (or weeks). You'll be surprised at how much better you will feel by having even one thing finally be done and off the list.

How are you today?

2010-10-27T14:51:00.001-05:00

I'm just a little left of normal for my "typical fibro" self today. I'm waiting to see if my daily abdominal pains will come on this afternoon. It's just about that time, but I'm changing factors to see if any of them help. Wish me luck!!

What's on your mind? Fun or serious questions welcome.

Fright Morning

2010-10-26T09:35:00.000-05:00

I just survived a harrowing ordeal. It has nothing to do with Halloween or the various seasonal pranks or visions of ghosts or demons or anything like that. I just experienced an awful episode of sleep paralysis.

The Real World:
Here's what happened. I got up just before 6am today to go to the bathroom. This is not unusual for me, but getting up does frequently interrupt some of the best possible sleep I get, which occurs in the morning hours. This is why I tend to get up for work around 8am and usually still feel a bit like a zombie for several hours while my stiff muscles thaw out a bit.

Anyway, after the pee break, I got back into bed and tried to get comfortable. It has been raining all night, but softly. The wind, however, was still howling wildly outside in frequent gusts. Today is also garbage day in my neighborhood, so the trucks' brakes can be heard in the distance.

I woke Don up with my pee break, so he decided to start his day. After a half-hour or so, I finally fell into a very light sleep, waking up periodically with Don's moving around the house and showering and such. At 7:30, Don gave me a kiss good-bye and went off to work.

My World:
Sometime after the kiss, I fell asleep again, knowing that I only had a few minutes before having to get up for work myself. I dreamt some usual nonsense, then "awoke" to realize I was in bed, looking at the door, the ceiling, my own outstretched arm.

I tried to move but noticed that I was not only numb, but tingling. My ears picked up sounds that I knew couldn't be Don's voice, but somehow sounded a bit like it - like he was talking to someone on the phone, from another room. I tried to call out to him to help me and heard myself struggle to get sounds out. I recognized this as sleep paralysis, but felt unable to shake free of it. I fought and fought to move my arm, only to see it lying there in its original position, despite my firm belief that I had managed to move it just a bit. My ears screamed with tinnitus and I felt the cold numbness and tingling in my entire body. I looked around the room, seeing changing spots on the walls, shapes that weren't what they should be, and knew these were signs that I was not fully conscious. Nonetheless, I fought and fought to move and scream.

The strong winds worried me, as I thought our patio furniture might break a window.   I worried that I would not wake up in time to go to work or at least notify someone that I'd be late. I worried that I might choke myself on a heating pad cord that was not even in the bed, but that I "saw" and "grabbed" with my hand. I tried using the smell of a hallucinated lotion bottle to wake me up. I tried waiting patiently for the paralysis to end while my ears and eyes experienced things I knew to be false. I kept drifting off and coming back into what I thought was consciousness, only to realize each time that I was still trapped in my own corpse-like body .

My patience wore out after a few times and I struggled again, determined to break through the paralysis and get myself out of bed, to no avail. This went on for what seemed like ages, but could not have been more than an hour, as my release finally arrived at 8:20am. There was no mistaking this for paralysis. The tinnitus was gone, the tingling, cold numbness was gone, and the room looked a lot less surprising. It was almost like the end of a violent storm. I was finally awake. What a relief! If there was a way to kiss the ground of consciousness, I am going to be doing that soon.

Have you dealt with episodes like this? What do you think is the cause of it? I was sleeping on my back at the time. The amount and quality of my sleep varies from night to night, and I have plenty of stress with all the pains, fatigue, responsibilities at work and home, weight gain struggles, and new, yet-undiagnosed symptoms for which I will soon have more "fun" tests to go through. I've had a concussion, too. I'm also on plenty of prescriptions to try to treat my many symptoms of Fibromyalgia.

Some or all of these could be contributing to this. Or it could just be a fluke thing. Whatever it is, I'm not looking forward to the next one.

Erythema Nodosum

2010-10-11T13:09:00.000-05:00

What's Erythema Nodosum (EN), you ask? It's basically slightly reddish, very tender nodules, occurring just under the skin, usually occurring on the lower legs. I've got them. This is new to me, and is occurring at a time overlapping some other new and troubling symptoms, specifically, intermittent mild to severe abdominal pain with nausea and fatigue. I've spent many couchant days with Wellington, just hurting and trying to feel better. I've had several days when sudden onset of pain and/or nausea hit me just before or at work.

The most recent episode occurred in the office last Wednesday around 1:45pm. My belly was wrenched with cramping pain, so I headed right to the rest room, hoping for relief. I broke out in a cold, dripping sweat while a terrible nausea came over me, all the while, still doubled over in pain. I had a meeting scheduled with my boss for 2pm, but ended up having to reschedule it, due to my unavailability. I had to text him about my emergency. I was stuck in that stall for about an hour before I felt stable enough to get my purse to leave work and drive home. My pain continued for several hours until it slowly began to dissipate to a milder version that would continue for about two more days. The heating pad on my belly helped with the discomfort as I watched episodes of Dr. G: Medical Examiner and Mystery Diagnosis, my newest favorite sick day shows.

There are several causes indicated for the occurrence of EN, including various infections and Inflammatory Bowel Diseases like Ulcerative Colitis or Crohn's Disease. The last visit to the doctor for the abdominal pain was on Aug. 27th with a new gastroenterologist, who suggested I try stopping the daily probiotics, in case my guts have too many bacteria in them. I have been off the probiotics since late August now, yet I still continue to have the episodes. All blood and urine tests done thus far have been "normal" so I'm not sure what is behind all this. I just know the abdominal pains and EN are linked. It's too coincidental for these to occur for independent reasons, right?

I have had a few days of a mild sore throat in mid-August, before all of this started, but I find it hard to believe that I could have had strep, a common cause of EN. Strep also doesn't explain the abdominal stuff going on.

At any rate, my research on this is definitely continuing until I can at least determine my next plan of action. With the way my last few doctor visits went, I feel like I need to present them with plausible ideas. The lack of thoroughness is very disheartening to me. My dermatologist was actually the one who diagnosed the EN, with just a quick glance and touch. He prescribed a topical steroid that I've been applying religiously since my diagnosis on Sep. 24th. He also gave me no reason to dig deeper for an underlying cause, which makes me a bit sad. Thus far, all the info I've dug up on EN has been on my own. He didn't even write the name down - I had to find it based on something that sounded like what he said, which I remembered as "ereth-- something".

On the bright side, last Saturday and Sunday were a breath of fresh air. I felt lots better than I had been lately, even as recently as Friday. I got outside, did some walking, and enjoyed some quality time with Don. I don't want to speak too soon, but today is going pretty well so far, too. However, both Don and I noticed that I've been having sick time on Wednesdays lately. We are wondering if there is something in the air or water in my work building (the water is not great, but we have a filter for drinking water which I use), or if there is some other thing in my routine, perhaps, that is contributing to my deterioration after a couple of days of the work week.

Over the next few weeks, I'm going to see if I can find out what helps. The first thing I'm trying is not taking my morning vitamins and supplements, since I noticed that I forgot to take them both Saturday and Sunday. I skipped them purposely this morning, to see if I can make it to Wednesday a little more easily this week. If that doesn't work, perhaps I'll try avoiding drinking the building's water and bring in my own. If that doesn't help, maybe I can try to get more sleep, like I definitely did last weekend.

I'm thinking something in my genetic makeup or somewhere in my body is at odds with something I'm exposing to it. Maybe I can narrow it down and avoid it. Wish me luck!

What Am I Smiling About?

2010-09-27T11:58:00.000-05:00

The other day, Don and I went out with some friends to enjoy some of our favorite beers together. During the conversation, I started noticing my back was making sitting uncomfortable. At first, I ignored it and tried to make the most of the socializing fun. Eventually, I gave out and slouched, noticeably. Apparently, I maintained a big smile on my face while I slouched in pain, oddly. I wasn't aware until one of my friends looked at me and curiously asked me what I was smiling about. I don't know! I guess I was trying to remain pleasant, despite my personal struggles. Perhaps the slouch itself made me smile because it was a silly position to take, in public. Whatever it was, it made me realize that I must do a great job of disguising my pain in front of others.

When asked about my smile, I confessed that my back was hurting me and I didn't know how to relieve it, I got a bit of a pitiful, synchronized groan from the group. I don't want people to pity me. This became apparent to me while I was using a cane to get around at work for a few days. The cane elicits such a pity response from everyone who knows you! I found it ironic that the cane really only indicated foot/leg pain or balance issues, while the other pains and problems of Fibromyalgia and my myriad other health problems continue - cane or no cane. When the cane stopped accompanying me to work, these same folks would delight in my improvement, assuming I was feeling perfect because there was no cane. This assumption is so wrong it disgusted me. I blurted out my feelings to some of my coworkers who felt compelled to celebrate my caneless walking. I also recall telling people not to pity me when they saw me with the cane and instantly frowned and gave me that look.

So, as I slouched, smiling like an idiot, it occurred to me that I am enabling this whole perception problem to continue. I'm part of the problem. People are confused about how I feel and what I'm experiencing because I'm not being true about it. I'm trying to fool them. But why? I never though of myself as a dishonest person. In fact, I suck at lying and always try to be honest with people, even when it's uncomfortable. You can't help someone understand you if you lie to them. So what's with my phony public persona?

Like many folks, I have learned that talking about pains and problems that others don't have is usually no fun for either party. I hate being a whiner - I want to be tough! Everyone wants to be strong. Nobody likes to be weak. I don't like to ask for help. I don't like pity. I want to be independent and able to help others.

Well, it's nice to want things, isn't it? I need to face facts. My condition is limiting, sometimes more so than others. It is poorly understood and poorly managed. I have ups and downs and I don't know when the direction will shift. Sometimes I think it's about time for an up, but I drop down a little more first. Fibro hurts. I need to work on the realization that I am chronically ill and am not as healthy as many others out there. There are others who are ill as well, and they will understand better my ups and downs. I need to trust that they can handle the truth about how I'm feeling. I need to give my friends more credit.

Being a party pooper sucks, too, though. I hate to ruin a party with my awkwardly depressing status updates. Everyone wants to help, though there is usually nothing they can do. Perhaps I'm hoping I can fake it till I make it by pretending I'm not feeling quite as badly as I really am. Sometimes, that works for me.

At any rate, I'm learning about my ever-changing self and how to best handle the various situations that arise. Do you have any stories or advice on how to handle the inconvenient symptoms with others around? I'd love to hear from you.

Wellington Bear

2010-09-14T11:20:00.001-05:00

This is Wellington.

He has lived in our home for many years - a bit longer than I have been around, actually. When I was having abdominal pains not too long ago, I decided he looked cuddly and soft and I wanted to hug him, to protect my belly and act as what I call a "magic pillow".

His name has inspired me to use him as a reminder and a symbol of wellness. There are times when I don't feel so downright awful and I need to notice and appreciate those times. Other times, when I do feel downright awful, Wellington is there for me to soothe me for a bit and appeal to my inner child while I wait out the pain and discomfort.

I want to thank the person who selected this bear as a gift for Don, many years ago. She didn't name it or assign it this purpose, but I'm glad he was there for me to adopt and cuddle, (especially when Don is not available for cuddling). Thanks, Kelly.

An Awful Charley Horse

2010-09-12T18:14:00.001-05:00

Last Saturday morning, the day I look forward to all week for sleeping as long as I possibly can, an innocent leg stretch around 5am triggered a ridiculously monstrous leg cramp in my left calf that is continuing to wreak havoc.

Now I've gotten Charley Horses in my calves before, and they are usually triggered by some instinctive leg stretching done in the bed, but this one was some kind of mother of all Charley Horses. I couldn't use my usual trick to chase it away - flexing my foot to help stretch the calf muscle out of its tight lock. This time, The pain was so intense there was really not much I could do to find any relief but suffer and wait it out. I was crippled so badly, I had to bend my knee to bring my leg up to my hands, but I was almost terrified to touch my leg. Plan B was to massage the muscle back into a relaxed state. Yeah, right. The tight rock of a muscle trapped inside made the skin on my leg not want to be touched, much less be massaged. I did my best to try not to wince loudly enough for Don to awaken, though all the movement was already ruining that. I said nothing and tried to settled back into an acceptable position for a bed-mate, while handling the pain as quietly as possible.

The episode lasted less than a minute, I'm pretty sure, but it lasted entirely too long for me, agonizing as it was. After the muscle finally gave up its death grip a bit, I tried to move my foot a bit to help stretch it. It resisted a lot and I was really afraid of damaging it if I forced the stretch, so I was very gentle about it and tried to sleep a bit longer.

Afterwards, I was immediately aware of that lingering feeling of the post-cramping pain. As crazy as the episode was, I didn't think I'd be feeling anything by the time I got up. Little did I realize that something evil was awakened that morning. The fibro beast of muscle cramps decided to crack the whip on me and show me who's boss. The first dozen or so steps from the bed that morning and this morning as well, both felt like I was trying to walk on a sprained leg. I couldn't bear the weight of the step and practically hopped to the bathroom each morning. Luckily, as I continued to walk, I was able to do so with just a limp.

As I write today, this Sunday evening, I continue to feel the after-effects of the ugly incident. I limp and long for the more normal feeling in my right calf. Both legs were sensitive to the touch before this, but compared to how my left calf is feeling, I am going to call the right leg "normal" by comparison. (For someone dealing with Myofascial Pain and Fibromyalgia, that's really saying something!)

I felt more comfortable with my cane with me when I took a walk with Don around the block, but I have been trying to stay off the leg for most of the day, with some continual stretching movements being my primary treatment. My back is also nagging at me but I can't comprehend what it is that it could want, as nothing seems to console it lately. I've used the heat wrap on it, which feels a little better, but doesn't relieve it. Medications are not cutting the mustard either, lately. I'm tempted to medicate with some delicious beer. At least I'll be enjoying something.

As for possible causes, I've read that dehydration, lack of potassium or electrolytes may contribute to such problems, but I don't think these could be the case. To be safe, I ingested some potassium-rich orange juice that we happened to have in the fridge and have been drinking plenty of liquids.

I also realized that Friday, as a response to my flaring Morton's Foot symptoms in my left foot, I'd devised a simple solution that seemed to help me greatly: I wadded up some tissue and taped a bandage over it on the bottom of my left foot, in the appropriate place (knuckle leading to the big toe). The restoration of the tripod structure of the foot relieved the pain in my second foot knuckle right away, and I was able to transfer the support from shoe to slipper in the evening, without doing anything special.

I'd learned recently in my trigger point workbook that there is a trigger point in the calf muscle that can contribute to pain in the foot. Perhaps when I changed the balance of my foot, it may have affected my overworked calf muscle? I don't know if any of this is even possible, but it's crossing my inquiring mind. I did not repeat the bandage trick yesterday or today, partly because I wanted to see if I could prevent further attacks, but mostly because I couldn't imagine bending my leg over my knee to work on the foot while my calf is so sensitive. I must find some sort of balance.

So, if things don't improve soon, I'll likely have a rough morning tomorrow and the cane will be accompanying me to work again.

UPDATE: As of Monday morning, I was still feeling the after-effects, but was able to walk on my left leg much better, even right out of bed. I may be able to do without the cane today after all. Hurray!

Did You Miss Me?

2010-08-30T17:05:00.000-05:00

I know I've been slacking on the blog posting lately. Sorry about that. Things have been a little weirder than usual for me, but I'll attempt to catch everyone up here, while it's on my mind.

Back on August 9th, I started getting these mild abdominal pains here and there. I didn't think anything of them then, and especially not a couple days later, when I also developed a sore throat, which I assume came from a bug my husband Don passed on to me. He'd been sick the week before with a bug, so I figured some virus was invading my system and wreaking havoc on my guts a bit. By Friday, the 13th (ooh!) my sore throat was better and I returned to work, despite the ongoing abdominal pain.

Having been diagnosed with Irritable Bowel Syndrome (IBS) a few years back in late 2007 or so, I'd been doing very well since I started taking a probiotic daily with my vitamins. I figured I'd been "spoiled" by the virtual elimination of IBS symptoms and didn't think much of a little irritation here and there, especially with the recent mysterious bug. However, as days passed, I started noticing the abdominal pain was waxing and waning at times, and when it was worse, I seemed also to bloat up, feeling pain from the increased pressure in my belly. I tried to notice if it had anything to do with eating or eating certain things. Sometimes I would wake up with the pain, though, so I couldn't make a connection. Don suggested I have simpler foods for lunch, so I had fresh fruits for lunch for a few days and felt a bit better.

The following Friday, August 20th, I had eaten a pretty large amount of nuts (almonds, cashews, and pecans) for a mid-morning snack. I probably had more than I should, considering my weight and binging concerns, but I enjoyed them well enough. A few hours later, the abdominal pains and bloating really got strong. Around 2pm or so I had just bought myself a late lunch consisting of a grilled cheese sandwich and small chicken noodle soup from our building cafeteria, since I was out of fruit. It wasn't fruit, but I figured it was simple enough for my guts. I took a few bites/spoonfuls and couldn't eat any more. I felt absolutely awful, so I left work to go to the ER and try to find out if something was seriously wrong with me.

Tip: If you can help it, try not to go to the Emergency Room on a Friday afternoon or evening. When I first got there around 3pm or so, it wasn't too bad, but as the hours wore on, the waiting room filled up with all kinds of people. Since I wasn't bleeding or unconscious, I wasn't as high a priority, so I had to wait several hours for a room/doctor. In the meantime, it was very cold and I had someone bring me two blankets to drape myself in while waiting. They took some blood and urine and did a few tests to check for gallbladder issues. My tests were okay, I was told.

When I finally got to a room, I was in a queue to get an ultrasound on my abdomen, to see what's going on. My gallbladder was found to be "distended" and possibly contain some sludge. The doctors (there was a shift change before I was released) latched onto the gallbladder thing and advised me to avoid fatty, fried foods. By this time Don had joined me and I looked at him in confusion. Don vouched for me as we both told the doctor that we already eat pretty healthy now, especially since my yeast-free diet a couple of years back. We prefer fresh produce, and indulge in "bad" foods only occasionally, here and there. I really could not believe this was the cause of my problems, but that's the information with which they released me. I was also given a Bentyl injection for my abdominal pains. Oddly, the injection was pretty painful, even though I thought I was an old pro at getting shots, as I'd gotten years of them for my allergies. I was also given a prescription of Bentyl tablets to take as needed at home, and was told to see my primary care physician for a more accurate diagnosis.

I saw my internist the next Monday afternoon on August 23rd. He ordered more blood testing for thyroid problems and celiac disease (at my mention). Those came back okay. He told me to see a gastroenterologist to see if more testing is indicated, possibly a CT scan, scope, or camera pill.

I saw a gastroenterologist Friday afternoon on August 27th. By this time, I'd tried the nuts again and noticed another episode of worsening symptoms, so I mentioned a possible nut allergy to the doctor, as well as all my other worries which were basically wallpapering the office with pamphlets of all the various conditions I'd read about online - diverticulitis, pancreatitis, gallstones, kidney stones, liver problems, diabetes, etc.

He was nice enough, but didn't seem concerned about all the things on my mind. He noticed I listed probiotics on my drug list and asked me how long I've been taking them. A couple years, at least, I'm sure, I told him. I added that they've helped me with the IBS when I was first having trouble, and that this bout didn't seem to be like the IBS I'd had before. (I'm not experiencing any urgencies this time.) Without ordering any additional tests, he instructed me to stop taking the probiotics for 2-3 weeks and see if my symptoms improve. If not, see him again and perhaps he will try an antibiotic. In short, he suspects a possible bacterial overgrowth in my gut.

Although the doctor never used the term, I recall having read about SIBO (Small intestinal bacterial overgrowth) being a problem for fibromites like myself. Sure enough, the symptoms seem to overlap with my own, though I'm not having all of the symptoms listed. (Those symptoms associated with the "output" of the digestive system seem to be absent.)

So, I've stopped taking my probiotic since the morning of August 28th and I'll see if things improve. So far, so good, but I have not tested myself against those nuts after the last two times. Don doesn't want me to suffer, but I'm very curious to see if might are the cause of my problems. I've also stopped having almond milk (I like Silk Almond Milk with my cereal in the mornings). None of my doctors seemed concerned about the nuts, even though I mentioned them to each one.

I have an appointment to see my gastroenterologist again on Friday, September 17th that I will cancel if I feel better nearer that date. I will keep you all informed about what happens.

The "I Don't Like This" List

2010-08-17T08:39:00.000-05:00

So far in my exploratory journey of self-awareness, here are some things I've noticed about my behaviors that I don't like.

I pour a full bowl of cereal in the mornings, and sometimes I even refill and have a second bowl. I love cereal and always have. I guess it's one of my comfort foods. But I always wish I could just eat a normal sized portion and leave it at that, like Don does. As I pour the cereal, I wish I could stop myself at half a bowl, but I haven't been able to do that much lately.
I tend to do my binging at or after breakfast time on weekdays, or just before leaving work in the early evenings. These are times when I'm alone and tend to cave to temptations. In the mornings, I used to dig into the peanut butter jar (when we had some in the house), just before leaving for work. In the evenings, I am usually good, but if I know there are snacks available, I taste, then ravage them. It's almost as if the taste of the forbidden sets me off into some no-holds-barred eating event. I need to be aware of this as it's happening.
My weaknesses are for: peanut butter, crispy salty foods like chips and crackers, sweets like donuts and cupcakes and chocolate treats, and I know I've always loved the blander cereals and breads.
I enjoy healthy foods but I tend to grab the quick stuff rather than prepare something healthy, even if we have the ingredients. Perhaps having healthier options ready to grab will help me here.
I have caved into cravings, thinking I could handle an indulgence here or there, but it seems like one thing always leads to another and the indulgences get out of control. I end up regretting them.
My fear of Fibromyalgia flares, along with some sort of procrastinational tendencies, seems to be standing in the way of my exercising more regularly. I love taking walks with Don and have been in the habit of taking the stairs to the plaza at work, but I wish I could implement a regular exercise routine into my day again.
I seem to have taken the easy way out on some of the above by using Fibromyalgia as a crutch or an excuse to do so. If this keeps up, eventually I will not challenge myself to do anything anymore because I'm chronically ill. I don't want to stagnate, regardless of the reasons. I need to associate long-term healing with activities that may bring about temporary flares.

Now, here is a list of the things I would like to see as changed behaviors:

I'd like to be more prone to select healthier, lower calorie foods for snacking, even though it may not be what I'm craving or as easy to grab as something less healthy. I like salads and healthy meals when they are served to me, but I have a hard time doing the work required to get these things prepared for myself unless I am motivated. I want to be motivated more often. I want to motivate myself more effectively.
I'd like to be able to handle an occasional indulgence without going completely overboard about it. I want to be able to take a reasonable serving and put the rest away and forget about it, rather than obsessing and negotiating about it.
I'd like to be able to use my time more productively so I can feel better about myself, rather than beating myself up about wasting time doing frivolous things or nothing at all.
I'd like to journal more and be honest about myself in the journal. It's my own private place - why does committing my feelings to words on paper seem so damning? I seem to be much better at being honest in my blogs, which is even weirder, since this is public. Perhaps I'm not comfortable with keeping things private. I should be okay with having feelings that I keep private.
I want to be brave enough to stop and talk to someone when I know I'm about to have a binge.

These are just a few of the things I've noticed after my last blog's epiphany. I will, of course, continue to observe and reflect on what I'm doing.

The Funk

2010-08-11T19:41:00.000-05:00

I realized today, as I sat at home, sick with some virus, that I've got some issues to work out. In a nutshell, I'm doing some binge eating, I've completely fallen off all of my "wagons," and I feel like I might be slipping into some sort of depression (again).

I'm restless, unable to rest, yet unable to do anything productive. There are things that are not that difficult that I should do, yet I don't feel able to concentrate enough on them to get them done properly. Even this blog post had to wait until I forced myself to take action. I've been kind of watching crap tv all day, not really able to understand what it's all for. The reality shows are interesting, but I found myself wondering how those people manage to go to work and focus on getting their stuff done. These hosts have jobs and they are helping people. It sounds like a great gig. Then I imagine what it would be like if I were to step into their shoes. It was unnecessarily overwhelming. Even a thought-exercise like that was too much for me today. What is happening to me? That doesn't seem right.

This time, however, I feel like I may be a tiny bit ahead of the game than the last time, simply because I'm not afraid to be aware of these feelings I'm having. I'm behaving in ways I don't like and feeling somewhat powerless over the behaviors. The behaviors come and go, so I have this false sense of control, peppered with extreme regrets and disappointment, disguised as mere setbacks, to help me move on.

Truly, there is something messed up happening in my brain and I need to take more assertive action before it gets any worse. I don't know how I'm going to proceed just yet, but at least I'm thinking about it and admitting that it's happening now. People go through these kinds of things all the time, right? I've seen movies. People see shrinks. Sometimes they find solutions, sometimes, they don't. I was hoping that I could engage in self-therapy, what with all my researching knack and being cognizant about all this mess. Then I realized that the journaling and the blogging has become less frequent. I don't know how honest I've been with myself about some of these things in my own private journal, but I still feel like it hasn't been completely.

I'm in a funk and I'm aware of it. Perhaps calling it a "funk" is another way for me to soften the news to myself. I don't know. I'm still sorting through things and hoping to figure out a more effective plan for removing myself from it.

Does any of this make sense to you? Does this kind of reflection belong in a private forum, rather than out here, for all the world to see? Does it make you uncomfortable to know that this is what I'm going through? My intent, of course, is not to make any of my readers uncomfortable, but rather twofold: to help me stick to pursuit of a plan to make positive changes, and to help my readers (I know someone out there must know where I'm coming from).

I've decided I am going to fight the funk and seek solutions. I now know what hasn't been working for me with regard to the diet and exercise plans that I so carefully laid out in older posts. I'm going to mark this as a less-ambitious, yet still very important, observational phase of my self-improvement project. I need to understand when and why I fall into the kinds of behaviors I don't like. Well, first, I need to identify all the behaviors that I don't like. I'm working on this. I'm hoping I can continue to keep my journey public, for the benefit of you and me.

Let's learn together and pick each other up as we fall. I know I'll fall. I think it's important to realize that. But I must learn to get back up again. Feel free to publicly or privately share your thoughts on any of this. I welcome your feedback. Well, I guess I might not welcome some crap "suck it up" sentiments, but I am at least ready for that possibility.

Thanks for reading.

My Worse Half - Left

2010-07-27T14:52:00.000-05:00

What a complete fudgebucket of a day today is!

My sleep has degraded until it just completely crapped out at 3am this morning. I woke up and went to pee, thinking I could fall back asleep after coming back from the bathroom if I don't turn the lights on. Yes, it's come to that. I try to fool myself into thinking I'm not really fully awake. It has worked occasionally, but not this time. I got back to bed and realized my plan failed miserably, as I was not able to get comfortable, plus I was wide awake (even though I spent all day at work yesterday feeling like a zombie). I gave up and spent my early morning hours playing on Facebook, waiting for the Sandman to beckon me back to bed. He stood me up.

So I started my day and flipped on the news while I had some breakfast. Things were fine until I felt like I needed to move my neck a bit, so I did. Instead of feeling a relieving adjustment, I felt excruciating pain. It feels like I've contorted it into some awful position, but all I did was move it a little bit. I didn't even stretch it!

So, ever since about 6am this morning, the left side of my neck, my left shoulder, my left arm, and the left side of my back, all the way down to my left hip, are all seized up in pain that intensifies with any movement. Lovely.

I waited a bit to see if it would subside. Eventually, I had to decide to use up yet another of my very few remaining vacation days to stay home and rest. I'm on much more pain medication than I ever really consider using, especially on a work day or a day when I need to drive. Since I'm home, I thought I'd "pull out the big guns" as my husband said.

I tried going back to bed after contacting my boss, but there was no relief there and still no sleepiness. I should be napping or something right now, but I can't. I'm feeling out of order and unable to sit still. My eyes feel like I've been awake for weeks, but I can't sleep. I can't even lie down comfortably. I'm restless. I can't even deal with the television today. I turn it on, hate whatever is on, search for something else, give up, and turn it off. I've done this about three times today.

I feel irritable, I guess. It's probably a good thing I'm home by myself. I hate subjecting Don to my irritability. What's weird is that I recognize it (I hope) right away. It's such and icky, uncomfortable feeling that just feels incurable. Bleh. I just wish I could shake it off. There's a lot that needs to be done, but I'm in no shape to do it. Yet I can't seem to rest. It all just seems wrong and messed up.

I am going to see if there is a trigger point I can find that might be causing this problem. I have my Thera Cane and Knobble here, waiting to help me. I hope they can. If that doesn't work, I've got a heat wrap on my shoulder and hopefully I can lose myself in some reading or something. Sometimes distraction is the only treatment that works for me.

Mallory, My Fibroduck

2010-07-18T15:13:00.001-05:00

This is Mallory. :) Mallory is going to help spread awareness for Fibromyalgia by posing for photos in various locations. I take her picture and upload to Fibroduck's website, where everyone in the world can see her.

Her spots represent the invisible illness of Fibromyalgia, so you can tell she's not a "normal" ducky. She's still trying to live a fun and fruitful life, even though she's different, just like I am. Although sometimes it may seem strange to see a ducky in certain places, it's representative of how strange it may feel for us fibromites to be in this world - kind of like a duck out of water. Even though you can't see how strange it feels, we feel it. We compensate however we can and try to make the most of each situation.

I bought my ducky in a 3-pack from a local Party City store for under $3 and customized her with dots myself, but if you like you can order a free* ducky from Jamie Goodwin, the creator of Fibroduck. (*Due to the expense of running the charitable website, she is now asking for just the cost of postage.)

Please visit Fibroduck online and view some of the photos uploaded there. Download a poster and join in the fun by taking your own photos and uploading them to share with others. It's a fun way to do something that helps fibromyalgia awareness, which in turn helps fibromyalgia patients like myself get better, more effective treatments and helps reduce confusion and misunderstanding of this chronic, incurable condition.

P.S. I have two extra duckies I would be happy to give away to two lucky readers of my blog who are interested in joining up with Fibroduck. If you'd like your own fibroduck, please let me know by leaving a comment or emailing me check the profile page from my blog's "About Me" page). I will send a ducky to each of the first two people who are interested. (Be sure to leave me your email address so I can contact you.)

What Fibro? (A Wonderful Vacation)

2010-07-13T12:36:00.000-05:00

I just got back from a great week long vacation with my husband. We drove up to his old stomping grounds in Glennie, Michigan to stay with his childhood friend's family, out in the country.

The weather was sunny and hot for most of the trip, and we did lots of fun stuff, like canoeing (my first time), four-wheeling (another first for me), target shooting, a pontoon boat ride (another first for me), attending a local 4th of July parade, even tossing the old Frisbee around.

We also visited several great places along the way, including our favorite brewery, Founders in Grand Rapids, MI, and attended a Weird Al concert in Indiana on the way back home.

I noticed that, despite all the activities, I felt GREAT! I hardly dealt with any of my fibromyalgia or other health conditions myriad symptoms. I had only little pain in my back, neck, and hands and feet. There was no nausea, no headaches, no IBS problems, and very little (unearned) fatigue. This was all a great relief to both me and my husband, as he worries about planning vacations around my unpredictable symptoms.

I speculated as to the factors that may have been so helpful with regard to lifting my pains, fatigue, and health problems while on the road. Here is a list of possibilities I have pondered:

I got lots of warm sunshine, which means I got lots of vitamin D.
I ate and drank lots of yummy food and delicious beers.
I had little stress thanks to no work, no chores, no commuting, even no diet. My husband even planned all the stops and did all the driving. (Thanks, Don!)
I had plenty of distraction with new people to meet, new surroundings, and new experiences. I was busy!
I got plenty of exercise and walked a lot.
I got plenty of sleep. (I slept surprisingly well on all the strange beds.)
I had plenty of FUN!!!

I had a wonderful time and am very thankful that I got to experience it without being a fibro-drag on the rest of the group. (I hate slowing down everyone else's fun because I don't feel well.)

Unfortunately, now that I'm back to my non-vacation routine at home/work, I'm noticing the return of some symptoms. My asthma seems to be acting up at both work and home, causing me to cough, clear my throat, and sound hoarse again. (This was all gone on vacation!) I am digging up and finding that molds in the indoor air of my office building and possibly in my basement where I like to watch TV in the evenings could be aggravating my allergic asthma and possibly adding a post-nasal drip, which could be behind the throat clearing. The difficulty breathing seems also to be causing me to be exhausted during most of my day, and especially at the end of the day. To top it all off, my comfy, familiar bed at home doesn't seem to be comfortable enough for good sleep, as my sleep seems more interrupted and broken now that I'm home.

To top it off, my native garden is under attack by the village (again) due to ignorant folks making anonymous complaints that have no merit. The village is threatening to mow the entire parkway TOMORROW! Little does the author of the threatening letter realize that our native plants benefit the entire neighborhood, while the turf-grass they so seem to adore is harmful in several ways.

In addition to all this mess, I'm dealing with several other stressful situations that have to do with others and things out of my control, as well. I won't go into details, but it's so overwhelming that I feel compelled to keep making lists about follow-up tasks and chores. Ugh...

I suppose there would be no wonderful experiences if there weren't also awful ones, for comparison. I'll try to keep that in mind and appreciate my health remission for the temporary phenomenon it was, and look forward to my next one.

I'm wishing you all a pain-minimal day!

Thera Cane

2010-06-24T18:48:00.001-05:00

Hey, d'ya miss me? Hee! I've been busy with life and not blogging much the past couple weeks. I guess that's a good thing, no? Anyway, I am feeling guilty about leaving you all with that fat whale picture on my last post, so I'm going to give you something new to chew one: Myofascial pain and trigger points.

If you're not familiar with these terms, you can read up about them here. There is also plenty of great info available at various reputable websites and books. I had been diagnosed with Chronic Myofascial Pain before I even knew what Fibromyalgia was, so after the FM diagnosis, I got a great book (photo and link at left) about both of these conditions within the same person.

About a month ago, I saw my Fibromyalgia doctor for a follow-up appointment. While I was discussing certain new pains, we talked about my Myofascial pain, trigger points, referred pains, and how to go about treating it all. He is a good listener and we discuss every last bullet point and question that I bring with me during each appointment.

By the way, my dear Fibrofriends, I have a special notebook just for these appointments, and I if you don't, you should definitely invest in a dedicated one. You can write your questions down as you think of them, bring them all with you, then jot down the doctor's responses and instructions on the next page. This system saves a lot of sanity for us fibrofogged people!

Okay, getting back to the point, I showed him some of the diagrams in my book that showed certain trigger points and their referral patterns, and added that I suspected these could be the source of my recent pains and discomfort. He didn't claim to be any sort of expert (neurology is his specialty), but he agreed that it was a definite possibility worth exploring further.

The book also references heavily the works of Travell and Simons as the source of all the diagrammed information on trigger points and pain referral patterns. The sampling of diagrams in the book I had were extremely useful in untangling the mysteries of some of my daily pains, and I was interested in learning more. I had known of another book that focused solely on the self treatment of myofascial trigger points, but never took the plunge to buy it. I asked my doctor about it, to see if he thought it was worth getting. He was very enthusiastic about it and pulled an old first edition of the book I'd mentioned right off his bookshelf. So, afterwards, I went straight to a bookstore to leaf through this book and, eventually, I decided to go ahead and buy it.

The book I bought is The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, Second Edition by Clair Davies (pictured at left). This book is GREAT! I have decided to sit down and carefully read it from beginning to end, but I have already skipped around to various relevant chapters many times to help treat my own pains, as well as a few of my husband's.

In addition to the book, I also bought a couple of tools that are mentioned throughout the book to help already sore hands and arms from getting worse due to self-massage. There are some spots on one's body that are just not comfortable to reach, much less apply pressure, and doing so with bare hands would likely do more damage than good. I got the Knobble and a Thera Cane.

The Knobble, which is a hard plastic little doodad that fits in a hand and has no corners or seams in it. It looks a little like the nipple on a baby bottle, actually. It went with me to my last two massage appointments and my therapist used it very effectively to put pressure on the knots in my shoulders. She was thrilled to try it out and will be getting one of her own so she can use it on other clients.

The Thera Cane is a hard plastic small cane with rounded ends and several additional, strategically placed knobs that can be used in myriad ways to comfortably reach and massage all the muscles in one's body. It comes with its own little booklet of various positions and techniques for common trouble areas. The Thera Cane was actually suggested to me by that very same massage therapist several months ago, after she had tried it herself, but I wasn't quite ready for it then. Now that I have it and understand more about the way trigger points behave and what kinds of pressure helps to relieve the pain they cause, I feel armed and ready for the world (at the moment).

I ordered a second book and Thera Cane because I was so enamored with the power they represent to me. I am thinking of giving them away to someone I know who may need some non-drug pain relief.

Now a warning: It was in the book and probably in the booklet, but of course I had to go and find out the hard way about this one. When you get these tools and start using them, don't go overboard and use them too much on the very first day. I figured all that myofascial release massage I've been getting done the past couple years must have warmed me up for using these things on myself. Ha!

I had a knot in my left shoulder/neck area that was bugging me and the first chance I had, I grabbed that Thera Cane and applied the pressure on that trigger point spot. It felt good to press on it without having my hands hurt from the work. The leverage of the cane's shape definitely made it easier to work that muscle. It also made it easy for me to overdo it, I think. The next day, I was immobilized due to intense pain in that very same area, spreading to a larger area involving my back, neck, and left arm. I was useless that day. Luckily, it was a Sunday and I had nothing important planned.

The good new, though, is that the following day I was much better, with only residual pain. I was able to go to the office and work a full day with only moderate pain, getting milder. The pain was much more vague, no longer concentrated in that knot. It seems I had dissipated it. Eventually, I forgot all about the pain that I treated. My cane is ready at my bedside, but I already haven't been using it much. I use it when I need to.

It was a great investment and I'm happy to share my story with you all. It is my hope that you can experience some relief using the knowledge that I have shared here. As always, I'd love to hear from you about this. Please feel free to comment.

Note: Nobody is paying me to endorse any of these products. I believe in people sharing their experiences for free. Honest opinions are the only ones that count.

Don't Offer Me Any Donuts, Please

2010-06-07T17:18:00.001-05:00

Apparently, the persisting tightness of my pants is not all in my imagination. My last weigh-in this morning confirms what I feared - I'm slowly becoming... a whale.

No, not a cute, baby whale. A big, fat, blubbery, ugly one.

Okay, maybe that's a bit dramatic, but at 5' 4.5", I'm not tall enough to pull off a 150+ lb. weight. I've never been this heavy in all my life. I'm thoroughly disgusted with the weight gain especially because I know that I will have an even tougher time losing it, now that I have Fibromyalgia and Chronic Myofascial Pain preventing me from doing any meaningful exercise. I can do some walking and some stretching, but that's about it. Even after a walk, I've had to collapse from exhaustion upon my return home.

All you super heroes reading this probably think I'm pathetic. I might agree, but there's always that illness keeping me from blaming myself completely. Perhaps that's the problem I need to address. Although I can confidently blame Fibro for my pain and fatigue most times, I don't know that I can blame it completely for my fatness. I've caught myself eating or overeating to try to distract myself from my symptoms, or to give myself some enjoyment in a painfully frustrating day. It's not a bad thing to try to make myself feel happier, but turning to food - especially sweets and "bad" foods - is not a smart thing to do. Frankly, I'm surprised I could let something like this get the best of me for so long. Why did I wait to have this epiphany until now?

Staying on the wagons I've laid out has proven to be much easier said (or written, rather) than actually done. My flares are frequent and I never seem to know how I'm going to feel at any given minute. I may wake up okay, then be fighting tears by evening - or vice versa. I have skipped so many of my morning stretches, my strength-building exercises, and haven't done any regular walking or other aerobic activity, as I had planned. What's more, I've been skipping all the Calorie Count logging I thought I would be doing to help me monitor my intake. A little ice cream here, a couple beers there - and suddenly, I'm busting out of my jeans.

When I saw that horrid number on my scale this morning, I was going to keep this weight thing my dirty, little secret. I decided it would be far too embarrassing to tell anyone about this. I even considered removing that ladybug ticker from the bottom of this blog. But after thinking a bit about it, I decided this isn't the worst thing to be guilty of. Anyone with Fibromyalgia will certainly understand, as I'm sure the illness creates this problem for many of us as we struggle to survive the pain and fatigue and stress of life. I knew someone out there would know all too well how this happens, and perhaps offer me some support.

I'd like to rise above this thing I'd like to take this challenge and turn it into an opportunity to feel good about myself, instead of continuing to pity myself about how awful things are. Sure, I might fail, but I'm not going to know if I succeed unless I try. I'm going to try to do better and hopefully, once I can see any sort of progress, the momentum of success will help me to keep going.

That said, please do me a favor and don't offer me any donuts. I love food, especially desserts, but my allowance for these kinds of foods needs to be drastically reduced. Want to take a short walk with me? Care for some healthy veggies instead of that hamburger? Forgive me if I pass on your famous, homemade whatever. Believe me: I really do want to have it, but I've got to take care of my body before it gives out on both of us. I don't expect you all to change your behavior for me - I know you mean well. I'll just have to resist temptations a little better and be braver about risking flares for the greater good.

Fibroletters, Fibromyalgia Letter Writing Campaign

2010-05-31T16:56:00.000-05:00

I have recently discovered a great cause that helps to demonstrate how Fibromyalgia (FMS) affects people. The name of the idea is Fibroletters, Fibromyalgia Letter Writing Campaign. It was started by several patients with Fibromyalgia (among other conditions) to help the public understand of the reality of Fibromyalgia.

Per the Facebook page, here is a description of the purpose of this campaign.

This is not an FMS awareness campaign, but more of an FMS humane campaign.

The purpose of the group is to get at least 500 letters from those that suffer FMS, their families, friends, neighbors, co workers and anyone that can say how it not only affects the sufferer, but those around them.

Once we reach 500 letters they will all be mailed to the media AT ONE TIME. We are hoping that if its sent this way, it will be the same as if we were there. Each letter representing a person. Each person telling a story. Each story affecting another.

Please join us in sending a letter snail mail or email. (More info is on the web page.)

Whether you are a patient, friend, relative, coworker, or just know someone with Fibromyalgia, you will very likely have a perspective on how this health condition has affected you. Most readers of this blog (if not all) know someone who has Fibromyalgia. Many of you know me, and if you know me, you know someone with Fibromyalgia.

I have already written and submitted my letter via email. Will you please take a few moments to write a few words about how Fibromyalgia has affected your life and send it in as well? There is no cost, other than time, and your words will have an impact on this campaign. Your letter can help make a difference.

Please write a letter and send it in. Share this campaign with others you know. Join the Facebook page. Visit the website. Share the link with your friends and invite them to join. Post the call for letters in your blog or networks. Email about it. Talk about it. Tweet about it. Get the word out any way you can so they can reach their goal of 500 letters.

Our healing begins with understanding and the best way to help others understand is to write a personal letter.

Thank you!

Chronic Illness: A New Perspective

2010-05-29T14:39:00.000-05:00

A very common theme in the many blogs and comments from folks with Fibromyalgia and other, incurable, chronic pain conditions is that the illness takes their previous, normal life away.

I've recognized this same observation in myself. There was the old me from before all my Fibromyalgia and Myofascial Pain, and now the new me feels like much less the person I used to be. I have mourned my previous life and tried to come to terms with having lost many abilities that I once took for granted. As the t-shirt I'm wearing today states, I am "always tired, always in pain, always uncomfortable".

In addition to the personal changes that illness brings, patients of Fibromyalgia also have a very difficult time assimilating into a society that can't see this invisible illness. They have expectations of us that we want to fulfill, but physically cannot. When the expectations and misunderstandings come from family or close friends, they are especially difficult.

In an effort to keep myself from becoming hopelessly depressed about my current state of health, I am going to try an experimental perspective change.

What if I were to think of myself, now, as someone with normal capabilities, and recognize those in the world who can do more than me as extraordinary individuals with much more strength, stamina, and speed than I do?

I can call myself and all my fibromite friends the "normal" ones - ones who feel pain all the time, ones who have to rest frequently, ones who don't sleep well, ones who need to write reminders for everything down - we are the ones who are the regular, typical people of the world.

All those other folks - the ones who can participate in sports, the ones who have energy, ones who feel refreshed after a great night's sleep, ones who breeze through tasks like vacuuming or even shopping - these are all super-athletes of the world. Young or old, there are quite a few of these people who have extraordinary potential and can run circles around us "normal" folks.

If you suffer from a chronic illness, especially an invisible one like Fibromyalgia, try this idea on for size and let me know what you think of it. You don't have to share it with those super people, but see if the perspective will help. After all, it seems like more of the world is ill than not these days, doesn't it? Perhaps ill people are the new normal.

Nausea Treatments

2010-05-23T12:57:00.000-05:00

Recently, I'd had several days of moderate to severe nausea, costing me two days off my job, and plenty of discomfort and distraction besides.

When it first hit me on Monday morning, I thought perhaps it was something I ate, but soon I realized that my husband ate exactly what I did, and he was doing fine.

Then I reflected on any recent medication changes. There was a change to my asthma medications a few weeks ago, but why would symptoms come on so suddenly and severely, several weeks after making the switch? After several days of misery and trying to work, I called my allergist to see if I could get prescriptions for my old medications and switch back. Due to phone tag and fibro fog, I had't actually gotten the chance to speak directly with the doctor and discuss anything with him, so the change never occurred. After the weekend had passed, the nurse called back and asked about my status. I was feeling a little more sensible by then, and retracted my request to switch back to the old meds. I know my body doesn't like medication changes, even slight ones, so I thought I'd train my body to accept the new meds, rather than stir up trouble and possibly risk new symptoms to go through again.

For the moment, it seems that, whatever the cause, the nausea is now mostly under control, with some more typically minor waxing and waning here and there.

Last Friday, however, I saw my Fibromyalgia doctor (a neurologist) and asked him specifically about the nausea. He told me that nausea is not a typical symptom included with Fibromyalgia, and wondered along with me about what could have caused it.

Later on during the appointment, when I asked about B12 shots or nasal sprays and whether it was worth considering, I mentioned that I take a Super B-Complex supplement every morning after breakfast, along with several other supplements. He said that B vitamins, specifically, can make him nauseous, so he takes his just before eating, which helps him. I'm not sure why this is the case, but I can certainly try taking my supplements just before breakfast, rather than just after, to see if it helps. So far, so good, I guess. (By the way, he said I should be getting plenty of B from my supplements and food and shouldn't need injections or special sprays or anything.)

He also gave me some other helpful information about how to treat nausea.

Although medical marijuana is not legal here in Illinois, he does know that studies have shown it to be effective for reducing the kind of severe nausea and vomiting that chemotherapy causes for cancer patients. He also knew of several patients of his who have told him that the use it (illegally) and that it helps them, though it affects their sensibilities.

Something I could do whenever I feel bothersome nausea coming on is use an acupressure technique that tends to help. Basically, dig a couple of fingers into the middle of the underside of your wrist and firmly massage the area. Either wrist works, or you can switch between both. I am going to have to give that a try the next time I need it.

Lastly, he mentioned ginger as an effective nausea relief treatment. You can take it in the form of ginger beer (yummy!), ginger capsules, or candied ginger. He mentioned an Asian company called Dynasty that makes candied ginger and sells it in a yellow box. I went to a newly opened Whole Foods after work last Friday, and spotted some candied ginger available in bulk, so I bagged a bit of it and bought it. It's just plain ginger, in cubes, covered in cane sugar. I tried one on the drive home - boy was it strong! I couldn't imagine eating these as a snack, but as a treatment, I could see how the flavor could be distracting, at least. I have yet to test their effectiveness on my nausea.

Armed with all this knowledge, I feel ready for the next bout of nausea. Bring it on, FibroBeast! You may have won the first few battles, but I'll beat you next time.

I understand that Fibro is similar to ME/CFS in some ways... How do you cope with the pain, exhaustion, & broken sleep? (ie. 3 hours sleep, waking every 10-50mins) What things make you happy & take your mind off your illness?

2010-05-19T18:18:00.002-05:00

I wrote up my own Wellness Recovery Action Plan (WRAP), based on my observations of my symptoms, triggers, and treatments. I shared mine with the public here:
http://www.scribd.com/doc/18785920/Zouras-WRAP

It is difficult on the worst days, of course, but when I am up to enjoying friends or alone time, I can forget for a little bit. They key is to remember that there will be better days ahead.

What's on your mind? Fun or serious questions welcome.

Limitations: The Hard Reality of Fibromyalgia

2010-05-18T09:55:00.000-05:00

Today would be the day that I would officially start my Wagon 1.3: Endurance Training. However, I've had some setbacks and I don't feel that I've really made much headway on my previous goal of strength training. It seems that when I do even the wimpiest of the strength training exercises, I activate some latent trigger point and flare up in pain. In response, I need to lay off the exercises for a few days. On top of the pain, last week, I dealt with some unexpected and unexplained severe nausea that cost me two vacation days of work.

I am not going to give up, mind you, just because circumstances have not been ideal. I'd be a fool to expect that I could just suddenly overcome all my limitations because I decided to. I do tend to forget my limitations, because I know there are things I used to be able to do (like daily exercising, household chores, etc.) before Fibromyalgia came and beat me up. Now I'm unable to do things I used to do, and it takes significant effort to consciously remember that I can no longer do those things - at least not to the same extent that I used to, back when I was "normal".

Such is life with the FibroBeast. I'm on a very short leash and pulling at it is futile. I wish I could easily see the extent of my leash, but it's something that apparently seems to vary randomly. I haven't figured out all the factors that determine how far I can go before I hit the limitations each time. It almost seems the leash gets shorter each time I try, like Fibro is getting angry at me for my persistence.

Should I appease the beast and stop trying? Nahhh.

The Unpredictable Nature of the FibroBeast

2010-05-14T12:15:00.000-05:00

Unpredictable get the best of you?

Oh my, yes. I came across this blog post from a fellow chronic illness sufferer dealing with the unpredictable nature of her symptoms. I sure can relate! In addition to not really being able to plan a fun trip or event, I am now faced with the challenge of not being able to plan to be able to work on a regular basis.

I was out sick Monday and Tuesday of this week, due mostly to extreme and sudden nausea and abdominal pain and discomfort. I am completely out of sick time for the year already, so I had to use vacation time for these days. I was miserable and couldn't even work from home. The previous Friday, I did work from home, unexpectedly, thanks to dizziness that prevented me from safely driving to work.

When I returned to work on Wednesday (still nauseous and in a plenty of discomfort), I knew I'd have to address with my boss the crazy, unpredictable nature of my illness and how it's been affecting my work. I regret to report that I couldn't help myself from crying almost as soon as I started the discussion. How embarrassing! Here I was, talking about my job with my boss, blubbering like a child about my fears of losing my income and benefits. I was powerless against those damned tears! I tried to hold them back, but they overcame my efforts.

Although I worried the worst (that he was considering firing me for my absenteeism), he reassured me that he values my work (when I am able to do it) and that he has absolutely no intention of getting rid of me. He was very understanding and handled the awkwardness that I inadvertently created. The plan was to brainstorm a few job modification ideas that could accommodate me better. These were things I never imagined would be available to me, so just knowing that he would consider so many options was greatly relieving. We would regroup in a week or so to decide on the options we could agree on and move forward.

The lesson I learned here is that I shouldn't assume the worst, but rather open a discussion and pursue the truth. Worrying about stuff that won't happen is a waste of my emotions. I am lucky to have an understanding boss and to work for a company that realizes the value of my remaining employed despite having to make special accommodations for people like me. Thank you, kind employer!!

Have you had to make any special accommodations to be able to continue working with a chronic illness? If so, please comment and share the strategies you have tried. Tell us what worked and what didn't work. I came into that conversation not realizing there were any options available at all, so it may help others to share ideas from real experiences.

Wee! Wagon Train!

2010-05-10T09:16:00.001-05:00

I know I said I can't be on all wagons at the same time, but after taking a month just to get back into stretching, and after taking almost another month to add in strength training exercises, I've suddenly found myself peeking at the other wagons and getting ahead of myself. (I got antsy about the large list of goals I've made for myself and time ticking away.)

Here's what I'm currently doing and what I've learned from prioritizing my wagons and refocusing on each goal.

Exercise

Stretching (started on 3/18/10)
I've been doing mild stretching each morning, focusing key stretches on my newly discovered serratus anterior, to prevent that nasty spot at the bottom of my shoulder blade from coming back.
Strength Training (started on 4/18/10)
I've added a few very mild strength-building exercises to help regain some muscle mass. I used to do a few wall push-ups as part of the routine, but I'm noticing that these seem to be aggravating that serratus anterior trigger point under my arms, so I'm trying to mix it up and not too too many of these at a time.

I'm also making sure I try different exercises, specifically, exercises that target differing muscles and muscle groups, each day, so I don't overwork any muscles.

Fibro or not, I've learned that letting muscle tissue rest for a day is the best way to get results. When you exercise muscles, the tissue tears a bit. (They are miniscule tears, but together, they add up). After a day of rest, the torn muscle tissues can heal and build back up, hopefully with more mass, translating to more strength for the next round of exercises.
Endurance Training (unofficially started on 5/4/10)
May 4th was a pre-scheduled work-from-home day for me. It was a lovely, sunny and warm day, so I tried on some of my shorts to break in the season. Tragically, I could not find a pair that fit me! Unbelievable! So I weighed myself and was utterly disgusted. I was 148 lbs.! I've never been this heavy in my entire life! It's dangerously close to 150, which I never want to be able to claim as my weight.

This shocking news is what prompted me to act on this and the next wagon sooner than originally planned. So, when the work day was over, I put on my gym shoes and went outside to walk. I could no longer wait to trim down. It was beginning to cause additional problems with self-esteem and conundrums about my current wardrobe. I pushed myself (risky for a fibromite like me) to walk farther than usual and ended up being out for 45 minutes. It was exhausting, but I felt much better about myself for having done something positive.

I hope to do much shorter walks on the nicer days, to try to get my heart muscle working and see if I can extend my activity tolerance a bit. My last walk on 5/6/10 may have been too much, as I was exhausted and cold when I got back (it was chilly) and felt kind of exhausted for a few days afterward. I need to make sure I'm not fooled by that happy sun when the temperatures aren't quite as high.

Weight Loss
The day of that weigh-in and shorts debacle, I revamped my CalorieCount plans and decided to start logging my calories again. I modified my diet start date to be 5/5/10 and put in my start weight at 148. I also changed my end goal to be more reasonable and see how things go. I simply couldn't stand to postpone this wagon any longer!
Reduce Medications (started May, 2010)
I am trying to get more control of my pains and symptoms, so I won't have to take so many medications. With the warmer weather coming, I'm also hoping that my pain will be reduced as well.

So far, I've been able to reduce my Ritalin dosing from two a day to one or none each day. I've been experimenting with skipping my second dose, to see if there is any difference in my focus or mental capacities. So far, I'm not noticing much difference. Since this drug tends to make my heartbeat irregular a lot, I'm happy to reduce and, eventually, get off of it entirely.
Stop Finger Picking (started April, 2010)
Don has been my inspiration on this. Armed with Band-Aids, I've been trying to resist picking at my fingers, especially my thumbs. I used to feel like it was too wasteful to cover my fingers in Band-Aids every day, but it definitely helps me to not be able to feel those rough spots, so it's worth it. Sorry, environment, I have to make an exception for my own greater good.

Eventually, I hope to wean myself off the Band-Aids, but I'm not quite there yet. When they get too wet from hand-washing toward the end of the day, I take them off and leave my fingers bare for the remainder of the day, but I notice that those are the times I still pick, so they do make a difference.

I'm feeling much better about all these goals now than when I first realized I was trying to juggle them all without having them concretely written down and prioritized, so being on more than one at a time is not as overwhelming any more. If I do get overwhelmed again, however, I'll refer to this list order and make sure I choose the top ones over the bottom ones, if I have to sacrifice anything to survive.

I sure am happy to use this public forum to keep me motivated, too. If you have anything you'd like to add or any comments about any of this stuff, I'd be happy to read them. Please keep me going on these. I need to know you're out there, to keep me honest. :)

Serratus Anterior Trigger Point May Be the Reason My Back Hurts

2010-05-03T11:18:00.004-05:00

After researching and digging to try to find a reason for my stabbing, mid-back pain on my left side for the past month, I think I may finally have an explanation that makes some sense. In addition to Fibromyalgia, I also have Chronic Myofascial Pain, which is associated with those trigger points. Trigger points are muscles that, when knotted up, tend to refer pain to other areas in the body. Sometimes referral pains are not very logical, so it's easy to forget that trigger points might be the culprit of some problems.

The muscle that I suspect is causing pain for me the past month or so is called the Serratus Anterior, which is located under the arms.

When I learned of this muscle, I tried massaging the faulty muscle on my left side. I was surprised to find that breathing and movements hurt less while I was applying gentle pressure on the spot. However, it's a difficult position to massage oneself, as the other arm gets fatigued quickly. I told my husband about it and he rubbed it for me a bit, which felt good. I'm now focusing my heat wrap and intermittent rubbing (as I can) on that spot, to help the pain under my left shoulder blade fade away.

I hope to do more focused stretching on the spot as well, to help prevent this problem from occurring again.

I think I may want to get The Trigger Point Therapy Workbook as a future reference, since it came in so handy for me on this issue. (The drawing above is from the book's website.) I'll keep you all posted on my progress with this pain.

Do any of you have this book? Has it helped you? How do you handle trigger point pain referral problems?

Costochondritis

2010-04-27T14:26:00.001-05:00

I thought I'd mentioned this before, but I didn't find it in my blog posts. I think I might be dealing with Costochondritis. Here is another fine page about Costochondritis.

Looking back through my journal and blog entries, it seems the stabbing pain in my back, on the left side, has been going on since at least early March - almost two months now. Before that, I had stabbing pains in the right side of my front ribcage. The slightest movement seems to cause the pain to increase, including breathing. The deeper the breath, the "louder" the pain gets. If I sneeze, even just once, the pain is aggravated for hours or days. It seems to make progress between sneezes, but with allergy season upon me, I can't keep the sneezing down very well.

Readers, if you've been diagnosed with costochondritis, tell me how you were diagnosed and what you do to treat it. I see my doctor in a couple of weeks, but I'd like to know if he'll be able to help me, or if this will be yet another one of those conditions that just gets chalked up to Fibromyalgia with no possible treatment options.

Wagon 1.2: Strength Training

2010-04-18T12:57:00.001-05:00

I've been busy working on my little self-improvement plan, as you may recall from last month's post "I Think I Fixed my Wagons".

I gave myself a full month to get on Wagon 1.1: Stretching. I'm trying to re-establish my daily habit of stretching each morning. One of my pitfalls is that, due to hypermobility, and probably also due to my personal tendency to be a perfectionist, I tend to stretch too much, which, in turn, causes me pain for days or even weeks following. The pain, in turn, prevents me from doing stretches because I'm afraid to hurt myself further. With all this in mind, I've been dutifully doing my little stretches each morning - sometimes more, sometimes less, depending on how I feel. After a month of this, I think I'm ready to move on to the next mini-wagon, which will focus on building back my lost muscle mass.

I've started mixing in a few of the isometric and other exercises that help with muscle tone and strength already, so I know I can do them. I wrote down a few, to remind me in case I get fibrofog. Among them are these:

Place palms together and push both arms together, resisting motion
Hook both hands together in front and pull arms apart, resisting motion
Put hands on forehead and move head toward hand, resisting motion (repeat on sides of head and back of head)
Put hand on lap, in sitting position and move leg up, resisting motion (repeat for other leg)
Wall push-ups at a slight angle (I can increase the angle as I get stronger)
Use the wall as back support and slide down to sit on a pretend chair
Leg squats

I did some of these after stretching this morning. I am going to give myself another month to get this new habit going and see if my muscle strength starts to return a bit. I am expecting some soreness and setbacks from overzealous days, but I hope to do better in the long run.

I'll check back in another month to report on my progress and embark on Wagon 1.3: Endurance Training.

If you could go on vacation for the next month with an unlimited budget, where would you go?

2010-04-16T09:23:00.002-05:00

Ooh, that's a tough one! I long to return to New Orleans, and I'd love to get there by train. The airports are ridiculous these days. French Quarter of New Orleans has awesome food, booze, and people, all in walking distance. Since I'd have a whole month, I could explore outside the Quarter and visit some of the surrounding areas and explore new things in Louisiana.

What's on your mind? Fun or serious questions welcome.

MaryAnn, Our Neighbor

2010-04-14T09:40:00.001-05:00

I was out touring our yard and cleaning up the branches from our rain garden this morning, because I couldn't resist. Anyway, when I was done with the branches, I came back to the corner and looked around a bit. To my surprise, I noticed our elderly neighbor came out her side door and walked toward me. I said "hi" and thought she might have something to say to me, but all she wanted to do is fill her bird bath, which happens to be right on the other side of our fence, next to her birdhouse (which is frequently occupied by non-native sparrows). So, I jumped in and introduced myself to her and try to make nice with her a bit. That's how I learned her name was not Mary, as I thought, but MaryAnn - she corrected me. She knew my name was "Bonnie", since that's how I introduced myself to her husband when we first moved in. I also made an effort to shake her reluctant hand and smile. It was a genuine smile, as I was pleased for the opportunity to finally speak directly with her after five years of living next door to her. She remains indoors about 99% of the time.

After the niceties, I bravely asked her what she thinks of our yard. I didn't want to assume she loathed it as much as her late husband, especially since I had her right there at my disposal. She jumped in with a "no" and a slightly soured face. "It looks like a buncha weeds - to me," she said. She further explained that it's nice for "out in the country", waving her hand toward the west and looking out as she said this, but not here, right next to her "nice grass", meaning her own sterile landscape, which, unfortunately, is the norm in my neighborhood. I bit my tongue, validated her opinion, and explained a bit about our Native Suburbia project and our goals. Not surprisingly, she didn't care about natives or biodiversity or anything about our project's goals, because in her mind, this type of landscape simply does not belong in suburbia. Old as she is, I'm not surprised that she couldn't be swayed on this point.

I maintained my polite and understanding demeanor with her, to keep the dialog open. As a last ditch effort, I pulled out the big guns and asked her if she's noticed more hummingbirds and butterflies in the neighborhood. Her face loosened up slightly. I could tell she was surprised and intrigued. No, she has not seen hummingbirds. Her daughter, who does live in the country, gets hummingbirds and she's seen them there, but not here. I informed her that we have several species of plants that attract them, and that we get lots of them each summer. I told her to keep an eye out this summer for hummingbirds, as they love our hyssops and columbines. I also asked her to notice the many butterflies that visit. (I didn't even go into the milkweed/monarch symbiosis, as I thought that was too much for today. Plus, I think hearing "weed" would throw her off. What an unfortunate common name the milkweeds have for native plant awareness. But I digress.)

As our brief conversation ended, I stepped away and tried to stay cordial, adding that I didn't want there to be any hard feelings between us. She could not confirm that this was the case, but at least she hesitated a bit so she wasn't completely a dick about it. Besides, I'm hoping the relationship will soften while she ponders the conversation later, on her own. I'm also hoping that every time she sees a butterfly or hummingbird, she'll think of our yard and how we made this possible for her.

I take this conversation as a win. I didn't want to shut her down completely, because I knew that I could appeal to her, as a woman, by mentioning the undeniably beautiful points of interest in having a yard like ours - hummingbirds and butterflies - and hoped to rely on her avoidance of social awkwardness and requisite friendliness. She's obviously been influenced by her late husband Ray, who, as you may recall, had nothing but harsh words for us and hatred for our River Birch tree. And I assume that our tree is not dropping its branches in a strange pile 20 feet away from it in our rain garden all by itself; she or her relatives are most definitely behind this stupid behavior. However, I am glad that she listened to what I had to say without cursing me out and being uncivilized, which is more than I can say of Ray.

NFA 2010 Walk of FAME: Fibro Fliers

2010-04-13T15:57:00.000-05:00

I have signed up for the 2010 Walk of FAME because I want to “Make Fibromyalgia Visible” now!

In honor of National Fibromyalgia Awareness Day (May 15), I plan to participate in and raise funds for the Walk of FAME in order to support ongoing research and programs for fibromyalgia.

The National Fibromyalgia Association develops and executes programs to improve the lives of people living with fibromyalgia worldwide.

The Walk of FAME is hosted by the NFA on May 15 and by other dedicated groups around the world at other times on or around National Fibromyalgia Awareness Day.

Together, we hope to “Make Fibromyalgia Visible” one step at a time.

View my page or my team’s page and current donation status and please make a donation (in any amount) by clicking the Make a gift! link.

Thank you!