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Dr. Bob is Robert Hsiung, MD,
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Posted by goose on May 13, 2002, at 2:36:07
Has anyone found anything that helps with fibromyalgia and the chronic fatigue it causes. I've had it for 20 years and have seen many drs. and tried so many meds. Nothing really seems to help. I also suffer from extreme daytime sleepiness. Can any one help me?
Posted by Lia Mason on May 13, 2002, at 10:29:11
In reply to fibromyalgia and chronic fatigue, posted by goose on May 13, 2002, at 2:36:07
Hi,
I can't vouch for these treatments, but I can tell you what the docs have told me. I had chronic fatigue and recovered. Now, years later, i have pain and fatigue that may or may not be related. Anyway... 2 ideas.
1-A man named R. Paul St. Amand has written a book called "What Your Doctor May Not Tell You About Fibromyalgia. He uses a drug called guaifenesin and is claiming amazing success. You can do a web search. There are about 2000 people taking guai and they've written a lot. I have not tried it. There are some fairly strict requirements you have to adhere to if you do it and you apparently get worse before you get better. Worth looking into.
2-My very excellent pdoc says the best results for fm he's seen are with low dose flexeril--2 to 5 mg. He said the dr. who has done the studies is named muldofsky.
Good Luck.
Lia
Posted by BarbaraCat on May 15, 2002, at 14:22:47
In reply to fibromyalgia and chronic fatigue, posted by goose on May 13, 2002, at 2:36:07
Oh boy, this is a big topic and no one on earth seems to have a handle on it. There's a good website that has alot of cutting edge info on fibro and chronic fatigue: www.immunesupport.com.
I have fibro and most of the time it's in remission (although I always have some pain and morning stiffness). However, when I go into a major flare it's hell on earth, especially since my depression symptoms are so intensified.I've tried guaifenesin and it definitely had an effect in that my symptoms were exacerbated dramatically and I coudn't continue. You also have to avoid anything with salicylates, which is practically everything, in order for it to have a fighting chance at all. This is not an easy road and there are many doubts that it works -- and even if it does, you have to stay on the regimen forever.
The one drug that I've heard really helps with the pain and eventually can even cure it is Neurontin. The rest (flexeril, ultram, etc.) just blunt the symptoms. I'm requesting my doc prescribe it when I see him at the end of the month.
One other thing is that the pain seems to be really occurring in the brain and not the muscles at all. This Substance P theory seems to me to make the most sense and new drugs are in the pipeline that aim to block this enzyme. And of course, even though it's the last thing we want to hear, exercise is crucial. Otherwise we'll just seize up and rust.
Hopefully we'll have a cure.
.> Has anyone found anything that helps with fibromyalgia and the chronic fatigue it causes. I've had it for 20 years and have seen many drs. and tried so many meds. Nothing really seems to help. I also suffer from extreme daytime sleepiness. Can any one help me?
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