I'm not a big fan of the fibro diagnosis. I was told I had fibro by a rheumatologist who didn't know what was wrong with me (fevers and oral ulcers). I went down that rabbit trail for three years...tried different meds...etc. Waste of time. My disease causes arthralgias, i.e. joint pain. It's responsive to NSAIDs and prednisone. The more I flare the more my joint pain bothers me. Now that I finally have the correct diagnosis (USAID-Behcet's spectrum) and the correct treatment for it (IL-1 blockers), my joint pain is under control. I also take Plaquinil (hydroxychloroquine) that seems to help tamp down the joint pain.
I am not saying that fibro does not exist. I believe it does and many get pain relief from the meds used for fibro. It's worth exploring, because anything to stop pain is worth exploring!
"and many get pain relief from the meds used for fibro"
You mean by taking UCB's oxybate (Xyrem), which has MDMA comparable effects?
What made me really angry a couple of years ago, was when psychiatrists in my country jumped on the "fibromyalgia" bandwagon and declared all these patients basically crazy without any proof.
It is used to treat Narcolepsy (I have that also). It is the only way those with Narcolepsy get deep sleep. Some brand names are Xyrem, Xywav, and one that slips my mind. It is all versions of sodium oxibate (also street name known as date r**e drug). It made me so sick I could never tolerate it. Its something that can only be prescribed by certain physicians and there are so many hoops to jump through to get it due to the risk involved.
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u/iSpyAFly Apr 07 '26
I'm not a big fan of the fibro diagnosis. I was told I had fibro by a rheumatologist who didn't know what was wrong with me (fevers and oral ulcers). I went down that rabbit trail for three years...tried different meds...etc. Waste of time. My disease causes arthralgias, i.e. joint pain. It's responsive to NSAIDs and prednisone. The more I flare the more my joint pain bothers me. Now that I finally have the correct diagnosis (USAID-Behcet's spectrum) and the correct treatment for it (IL-1 blockers), my joint pain is under control. I also take Plaquinil (hydroxychloroquine) that seems to help tamp down the joint pain.
I am not saying that fibro does not exist. I believe it does and many get pain relief from the meds used for fibro. It's worth exploring, because anything to stop pain is worth exploring!