Those Tight Fibro Muscles

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

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

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

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?

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

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

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?

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

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

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?

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!

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

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

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!

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

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

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

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

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?

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!

UPDATE: See this important post as a follow-up to this withdrawal nightmare: https://xsarenkax.blogspot.com/2011/07/switching-to-savella-guess-who-called.html

Switching to Savella - Day 7

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

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

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

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

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

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

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

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

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

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?

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?

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)

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)

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.