Listen has anybody's pain been reduced with xyrem?

Discussion in 'Fibromyalgia Main Forum' started by hensue, Sep 12, 2008.

  1. hensue

    hensue New Member

    That is my question? i see where people have lost weight.
    I want to know do you sleep? Do you into a stage 4 sleep
    and does it help pain?

    Is there anyone out there who is on it and it has help the pain
    Please answer me.
    I read everything else but that
  2. Bunchy

    Bunchy New Member

    bump for hensue
  3. Daisys

    Daisys Member

    When I started taking xyrem, and getting deep wave sleep for the first time in 20 years, my fibromyalgia started to go away. My massage therapist noticed it, too.

    Experiments have been done that keep sleepers from entering deep sleep without actually waking them up, so they think they've had their usual sleep. They develop FM symptoms within a few days.

    I have lyme disease, and xyrem doesn't help with that pain. In fact, I wasn't getting good sleep with xyrem, until my pain was brought under control. (This pain came later than the FM pain I had for so long.)

    So, it depends on what kind of pain you have.
  4. hensue

    hensue New Member

    I am sorry i dont understand. Can you tell me again. You have contracted lyme disease after fibromyalgia. Were you tested before when you got fibro? How would you know the difference in pain. I hurt from head to toe.
    I am not saying you are wrong or i dont believe you. I just understand enough.
    Are you in the study?
  5. Daisys

    Daisys Member

    I actually may have had lyme disease for a very long time. It can be a relapsing/recurring disease. Or, maybe I just got it a couple of years ago, but I believe I've had it for decades, as I look back at my life and learn more about lyme disease.

    In 1978, I got suddenly sick. I could hardly get out of bed and slept almost around the clock. It was later diagnosed as CFS. It took about 5 years to get back to almost normal, just with less energy.

    Then, in 1986, I had some physical trauma, and got FM, and the insomnia that goes with it. That was also diagnosed later--sometime in the 90s.

    Then, a couple of years ago, I was suddenly struck with such pain, I couldn't believe it was possible. I was treated for it, and it gradually lessened, but I still had FM pain.

    Last year, I had to change doctors, and my new doctor understands lyme disease. He recognised it in me, and I've been under treatment for it since that time.

    Treating lyme disease causes pain because the spiroketes (a type of bacteria) that cause it release toxins when they die. At first, the treatment is very hard, with the symptoms getting worse, and more pain. I'm just now feeling better. I have another year of treatment to go (or maybe more), but hopefully, the worst is over.

    When my insomnia was finally solved, the FM pain went away. My massage therapist could tell when my muscles relaxed. When people can't get into deep, delta wave sleep, they will develop FM symptoms. If they don't wake up completely, they think they slept normally.

    So, I could've gotten CFS, and then FM, and then lyme. The reason I believe it was actually lyme disease all along is learning about it.

    I go to lyme forums, and a lot of the people who post were diagnosed with CFS and/or FM before they found out it was lyme disease all along. Lymenet flash medical questions has a lot of examples of that.

    I'm not in any study. I hope I made sense. I know it's hard if you have brain fog, like I did for so many years. I hope you find help for your pain.
  6. hensue

    hensue New Member

    When i started hurting it was from head to toe. Of couse i think i had chronic fatique way back as a child. So where did you get tested for lyme? How do they treat it?
    sorry so many questions but i appreciate it. are u still taking xyrem and your muscles are relaxed.
  7. Daisys

    Daisys Member

    An integrative physician put me on xyrem. First, he tried all the other sleep aids, even using several at once. When all else failed, he did the paperwork, and I was given the perscription. It's a controlled drug, used for narcolepsy, but now off label for the sleep disorder of FM. I'm still taking xyrem for sleep, and it's working well for me.

    If you think you have lyme, go to lymenet where there is private messaging. The names of doctors who treat lyme the right way are not treated well in the medical community so their names are not made public.

    They are the ones who have lyme, or someone they love has it. They put their license to practice at risk to treat lyme with long term antibiotics, but it seems to be the only way to cure it, unless it's caught at once.

    I don't mind your questions. I have asked many myself and been helped.

  8. aftermath

    aftermath New Member

    It did not work well for me. It gave me brain fog 10x worse.

    Although I get stage 3/4 sleep, my first sleep study showed early onset rem in 3 of 4 nap tests on the MSLT. That caused the Xyrem script.

    When I repeated it in a better (arguably the best) sleep lab in the country, I had none.

  9. hensue

    hensue New Member

    Even with xyrem you did not get the deep sleep 3 o4?
    Help me understand never had a sleep study?
  10. does this really help delta wave sleep? I finally switched to trazodone (some weird neurologists had put me on klonopin) and it was like a miracle, I could finally sleep after suffering horrifically for close to 10 years

    I'm really curious how trazodone helps delta wave/slow wave sleep. on my sleep study I had 0.1% SWS

    my Lyme test came back with 0.11 for igg/igm with 0.8 being a positive result. So maybe an IgeneX or western blot would be more accurate??