Fibromyalgia & HIV/AIDS
Feb 20, 2001
I have had debilitating pain wondering around in my body for 4 years. After years of testing and searching, this condition was finally diagnosed as fibromyalgia and I was given Elavil. First, 25mg of Elavil knocked me out for two full days. I kept taking 10mg at bedtime, because the pain was constantly spiraling out of control and I felt, that I was loosing my mind because of it.
I did some research on this strange and not well understood syndrome, that's not even a legitimate diagnosis in many MD's mind. I realized, that I have some kind of a major sleep problem. My friend told me, that at night I do not rest, even though I am asleep. He told, me that I freaked him out a few times, while snoring loudly, sitting up in the bed with eyes wide open at night. I have a hell of a time getting rest. Elavil did help me, but I have flare-ups all the time. My symptoms are so bad, that many times I can hardly move because of pain. I ,also turned into a highly accurate barometer. When the wheather turns warmer, I am knocked out because of pain, yet tests show, I do not have rheumatoid arthritis.
I heard, many of the HIV meds cause sleeplessness. It seems, that I am not getting the right kind of sleep, which perhaps has been a life long problem now possibly made worse by taking a lot of meds.
I take Ziagen/Zerit/Viramune/. Inched back up to 25 mg Elavil, after starting with 10mg. I also take Nutrivir and some chinese herbs, my pharmacist gave me. This helps me wake up in the morning and gives some energy.
My life has been hell, because I can't anticipate the flare-ups with any accuracy and they can come daily.
I seem to be an oddball and I have only met two people, who have fibromyalgia this severe in N.Y.C. over the past 5 years.
What can I do? I hope, you won't dismiss these symptoms as depression or as some psychiatric problem! I have been told that many times before and I have absolutely no respect for MD-s, who blame me, my mind etc, who cant' admit, that they no nothing of this strange and potentially debilitating problem.
Thank you, A.J.
Response from Dr. Bartlett
Fibromyalgia can cause very debilitating symptoms. For a good reference read a recent article by Dr. Jerry Groopman in The New Yorker. There are fibromyalgia support groups in many cities, and I would suggest inquiring in your community.
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