Monday, February 28, 2011

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.


Saturday, February 26, 2011

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! :)

Monday, February 21, 2011

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!

Wednesday, February 16, 2011

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.

Thursday, February 10, 2011

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.

Monday, February 7, 2011

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.

Thursday, February 3, 2011

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. :(