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.

A Pain in the Butt

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

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

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

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

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

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

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"

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

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

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?

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

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

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

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

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!

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

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*

* 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

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

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

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

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.