More and more fibromyalgia patients are being helped with Xyrem.

Discussion in 'Fibromyalgia Main Forum' started by abbylee, Aug 11, 2005.

  1. abbylee

    abbylee New Member

    For those of you who have not had a sleep study and/or tried Xyrem without a study, let me encourage you to investigate this drug.

    Fibromyalgia, they are finding, involves improper sleep (and, of course, many other symptoms). Xyrem puts you in the deep delta sleep stage that you need for daily restoration, and it prevents alpha (daytime) waves from interrupting the deep sleep stage.

    Please ask your doctors to refer you for a sleep study and/or check with sleep doctors about Xyrem.

    There is a hotline for anyone who has questions about Xyrem or who is already using Xyrem who may have additional questions.

    There are trained mentors who are successfully taking Xyrem themselves, and they can answer any questions and help alleviate any fears that anyone has about using this drug.

    I have been taking Xyrem for almost 2 years and have had so much pain relief, no flares, and more mobility.

    Another member of this board has been taking it for 8 or 9 years as she was involved with a study during the 1990's. She is taking it for Narcolepsy with Cataplexy, and she also has fms symptoms. She says that the fms pain went away very shortly after she started Xyrem.

    The call is free and the number is 1-800-823-8893. Please call these people and ask about this drug.

    While no drug helps everyone, if this one will help pain, isn't it worth a try?


  2. abbylee

    abbylee New Member

  3. TXFMmom

    TXFMmom New Member

    The FCC clinic in Houston gave me the tape to review and I haven't really done it. I am on so many meds I didn't kow if I could face another.

    However, I am going to go through the process and give it a try. I have sleep apnea and I am not sure, until I see the tape and everything, if that would preclude me, but perhaps not with a CPAP.

    Right now, I am so tired and and sick of being tired and sick, that I would try a good witch doctor with the right credentials.
  4. fivesue

    fivesue New Member

    Thanks, Abbylee for posting this article...I need to sleep, and like, I'm not wild on another pill, but I'm so tired of being tired!

    And, if the witchdoctor helps, please send his name along...any port in a storm or any other trite cliche' will do here! (-:

    Hope you have good success with sleep...boy, wouldn't it be great to feel good again?

  5. abbylee

    abbylee New Member

    Actually this isn't a pill - it's a liquid!! And it works.

    Not so sure I understand what you mean by "witchdoctor."
  6. abbylee

    abbylee New Member

  7. elsa

    elsa New Member

    I'm so glad you are feeling better. FM is indeed wrapped up with sleep disorders. If I had to do the last two years over again, I would have opted for having the sleep study as a first line defense against FM/CFS.

    With the results of my study being only slight alpha intrusion coupled with no REM sleep, xyrem wouldn't have been the drug for me. ( Suppresses REM sleep ). Lucky for me, lunesta fits the bill for my particular disorder.

    Thanks for posting such an encouraging "heads up". You surely have given hope for the FM/CFS patients out there.

    Take care,

    P.S. Guess I should have proof read this thing last night!! Had some serious errors to correct today! Sorry all! LOL[This Message was Edited on 08/13/2005]
    [This Message was Edited on 08/16/2005]
  8. abbylee

    abbylee New Member

    I think fms patients can have a symptom of every disease there is, because I keep hearing about more and more problems with fms patients. No wonder the medical profession is confused!! Look at us.

    You and I have had sleep studies, and we both have sleep problems, but are they the same? No. So now what??

    I just hope that some day some way a cause and a cure become obvious.

  9. elsa

    elsa New Member

    I'm right with you on the cause and cure of FM/CFS. Won't it be great to have it understood and treated and done with instead of this hunt and peck way we have of treating our illnesses?

    I guess, in the mean time , it's going to be people like you who share information and encourage others to keep going that will make a difference in the quality of FM/CFS sufferers lives.

    Talk to you soon,

  10. abbylee

    abbylee New Member

    Thank you for your kind words, but I suspect you would do the same, as would everyone on this board. Have faith!! There must be an explanation for this sickness and one day someone will find it.