I hope this is going to be put on the right conversation I read years ago that it wasn't progressive.....NOT. I don't know what they meant by progressive then....that it doesn't kill you? I've had it for many years and I'm 68 and Yes, it's worse along with aging problems. I take a hydrocodone/tylenol combo and it's just not cutting it but if I try to take more, which is allowed, it increases daytime sleepiness. Cymbalta too which doesn't seem to be working anymore for depression or pain. What do I do now? I have Xanax on hand and I take that or Ambien for sleep but each has it's problems. I also take 50,000 vit D. each week as prescribed. I asked for and my Dr. had to jump thru hoops to get a sleep apnea/daytime sleepiness drug, Nuvigil but I'm only able to tolerate 1/4 of a tablet and I still can end up awake at 3am after taking Ambien. After a tiring day I can find myself waking up after noon. My schedule is the pits. I'm having more trouble walking....get shooting pains through my hands, and a swishing sound in my head. Ain't it all fun?!! MA
First, the final results from the 63 FMily members who responded: Percentage who felt better over time: 16% (10 members), % who felt worse: 68% (43), % who are the same: 16% (10). These numbers are a little different than my accumulated experience with patients over time. Originally my experience was 33% in each category, but over time I am seeing more that report worsening, so my patient experience is now about 30% better, 40% worse, 30% the same (based on over 20,000 patients) But these numbers include those patients who I don't see regularly anymore because they feel better, and include many in the "same" category who have severe chronic pain, no better or worse.
So what accounts for the higher percentage of "worse" between my community patient group and our FMily poll group? (the "better" and "same" % were equally matched) There are 2 different populations. With my patients, I determined everyone's "response" based on follow-ups. In a poll, only those who respond are counted in the results. Statisically speaking, those with worse FM are more likely to be involved in a community support group (like WebMD) than those with better or same FM. So our poll pool is statistically stacked! (Say this fast 3 times correctly and you win!) I believe this predicts a higher percentage of "worse" responders, as the actual poll supported.
I find those who do better or the same over time are more likely to have the following characteristics: 1. Early diagnosis of FM after symptoms began 2. Younger age when diagnosed 3. Successful response to treatments 4. Fewer associated chronic conditions 5. Have flexible job situations 6. Able to follow through with a home program
Those who do worse over time are more likely to have the following: 1. A delayed diagnosis from the time symptoms first developed 2. No response to treatments, or non-compliance with treatments 3. Numerous associated chronic conditions 4. Stessful and physically demanding jobs without flexibility 5. Painful progressive osteoarthritis 6. Men whose FM came on rapidly and caused early disability 7. No successful, reliable home program
Osteorthritis is not felt to be a "cause" of FM, but it can make areas worse or more prone to flare-ups over time, and cause overall worsening. I'm seeing this more as I have been in practice a while and have been following the same people for a number of years.
Even though many are reporting feeling worse over time, I still think there is a silver lining present for most: our FM treatments are actually helping us and we are learning positive strategies. Compared to the person's pain level who is not getting fibro treatments over time, we are doing better. Even if we are getting "worse," it is at a slower rate than if we had no treatment. Or another way to look at it: We are doing better because we are treating our FM than if we were not doing anything at all.
OK, so maybe this is not quite a silver lining...more of an aluminum lining. But still, our fibro is what it is and we must make the best of our situation.
Take care. Feel better (or the same, if it's not too bad!)