Reply To: Xyrem side effects may be dramatically underreported

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pappysgal80
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@pappysgal80

I am new to this support site but long time memeber Narcolepsy Network who’s memebers have helped me a great deal with my Narcolepsy/Cataplexy that I have suffered with since my teen years but back then a daily nap would suffice, but after age 35 things changed tramatically for me with sleep attacks occuring daily several times day along with HH and falls and muscle weakness and the multiple auto accidents and the embarrassment of not being aware you are falling asleep esp at work. My dozen or so sleep studies all indicated 0.5-1 min to sleep with no REM onset. HLA testing positive. BUT still many doctors are not trained to diagnosis yet treat this disabling disease. I am 62 now and due to years of not getting treated, the accidents,falls etc.. I am never going to be normal. But I want to comment on Xyrem. I was put on this 2 times 2 different doctors and each time i could not tolerate the widespread body pain i suffered which I reported to Jazz but they did not seem to know why this occurred with me. Has anyone else suffered widespread pain in joints after taking a dose Xyrem with the pain so bad you can not sleep. I have MGUS and other issues