Ajijaak

Yes, you're right - FMS is a highly individual disease, and one of degree. For example, I've known fellow sufferers who are very high-functioning, and regularly run marathons. I've also known people who are confined to bed almost entirely. one friend was DX'd with it about four years ago (I think this was right after he husband, then 62 or so) was DX'd with dementia). For six months, she couldn't even get out of bed. Then, when that extended flare went away, she never had another. She still has to watch her stress level, etc., but she doesn't even think of herself as having FMS anymore because it no longer affects her daily routine

For myself, it's been getting progressively worse, particularly the pain, fatigue, and fibro fog. I'm 37, and a lot of days I feel and function as though I were 87. My pain is a constant - every single minute of every single day; it's only a question of degree. Some days, it's so bad that I can't get out of bed; others, I seem virtually normal.

My pain runs the gamut, but here are the major types: severe joint pain, a la rheumatoid arthritis; nerve pain, which becomes especially bad in hot weather (thank God I'm out of D.C.'s humidity now!), and which feels like every nerve in my body is being zapped with cattle prod; and muscle/connective tissue pain. Sometimes it's easier just to say that "every fiber of my being" hurts.

What helps:

Well, my meds, when I can afford them, get me through the day. Ultracet for pain, Skelaxin as a muscle relaxant, and Adderall for the fatigue/fog. A (very) occasional Bextra as an anti-inflammatory. Oh, and Paxil CR for depression, which I'd be taking anyway, fibro or no.

Sleep: Yeah, I know, what we all need and can't get, right? Although, since I've been on the Adderall, I'm finally hitting REM at night and getting some rest. That makes a HUGE difference with regard to pain. It doesn't diminish it in literal terms, but what it *does* do is put it in its proper place ( and perspective) in my brain, so that it only becomes a part of my day, not the overhwleming, always at the forefront, banging on my skull, I'm-heeerrrre-pay-attention-to-me thing that prevents me from seeing anything else.

Exercise: The only thing I've found that works for me is Curves for Women (sorry, Ed! of course, maybe if you put on a skirt . . . ). It's 30-second cardio followed by 30 seconds on a no-weight, hydraulic exercise machine, followed by another 30-second cardio, followed by . . . you get the idea. You can work at entirely your own pace, and you can skip whatever hurts. I've been doing this since mid0January, and while I haven't lost any weight at it yet, I'm more flexible than I've been in years. I also occasionally do a modified form of Pilates here at home on a mat, when I'm feeling particularly motivated. What they say about exercise being most important is true, but impossible when you're in mid-flare. I highly recommend something like Curves for those of you who can do it, starting it when a flare is gone or at a lower ebb (and I've heard a rumor about a similar men's club, but don't know whether it's true), and/or Pilates at home - not to meet the Pilates standards for rigor, but jsut to do the exercises at your own rate and pace to increase flexiblity and reduce pain.

FWIW . . . .

A