Is there anyone with CFS who has had success with Xyrem? I've suffered with CFS (not fibromyalgia) for about 25 years and would be interested in hearing what benefits Xyrem has provided. Thank you, Kim
14 Oct 2013
I don't have any of those - I am on Xyrem for REM Behavior Disorder and Excessive Daytime Sleepiness. My doctor signed a form saying I have narcolepsy - so my insurance pays for it - Yay! It costs between $4,000 and $8,000 a month! It is working well for me. I've been on it for 3 months and I no longer take the second dose and am sleeping 7-8 wonderful hours a night! I am still sleepy during the day - guess it just takes a long time to catch up. I know I am healthier, and it feels great to sleep that long. I am no longer taking Klonopin and Amitryptaline for sleep anymore. It was tough adjusting to the side effects of high blood pressure, leg swelling, and much increased constipation. But, for today, I have it and I get to sleep tonight! If I can help you, just post a comment to this and I'll reply. Take good care - zzzzzzzz (EJ23)
19 Nov 2013
Most people with fibro are exhausted all of the time because they have poor sleep quality. Also I believe more people are diagnosed with fibro than CFS because it is a more recognizable term. I still believe a lot of doctors don't believe either one exists. I do, I have had it longer than it has had the name (Fibromyalgia). But, to answer your question, if it helps your sleep it should help your CFS. I have not tried it, but thinking about it sometime. Hope it works for you!
13 Mar 2014
I sure hope you get this. It is amazing for CFS! If you can get this by all means do! I went from being bedridden to be able to do so much! I just don't understand why no one if fighting for this for us! I'm so mad!!! If it does not get approved for CFS soon then it will be taken away by my insurance company and the few who are willing to cover it for anything other than narcolepsy.
I take it a little different than most. I actually take between 4-4.25ml (3 hours after a light meal and 4 hours after a heavy meal/this is a must) and instead of redosing like suggested 2 1/2-4 hours later I take my next dose when I wake up naturally. I tried taking it the first way suggested but it didn't work out for me. I sleep late as you can imagine but I feel so much better for the rest of the day.
Just think for people who aren't as sick as me they may be able to get the majority of their life back but will never know because chances are their insurance companies won't pay for it. Doesn't our government want sick people to go back to work who are on social security. People who are really sick like me don't want to be on social security. It stinks! I loved working!
By the way, my insurance pays over $9,000 a month for this. I see it on the invoice.
Just in case you don't know. They did a study with fibromyalgia and Xyrem and the results were extremely promising! The wonderful uncaring FDA didn't approve it for fibromyalgia because they were afraid that the active ingredient in it which is GHB (the date rape drug) would be readily available on the streets. Let me just tell you first there is no way in hell someone with fibromyalgia or CFS would sell this because it is too good to be true for our diagnosis. Next they have made it taste absolutely awful!!! They have added so much sodium that even after 8 years on it I still make a face and can hardly stand the taste. I don't care if I had 4 strong margaritas I would still know that something was wrong with my drink!!!
Good luck to you and do report back!
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