Participating in research

Discussion in 'Fibromyalgia Main Forum' started by EllenComstock, Oct 10, 2002.

  1. EllenComstock

    EllenComstock New Member

    Hi, Everyone:

    Has anyone ever participated in any FMS research projects? I will be in one studying the sleep problems of FMS at Henry Ford Hospital (located in Michigan) next month. I will be there for four days and two nights. The bad thing is that I have to be off my pain medication for several days before that and the Elavil for possibly two weeks before (they will let me know for sure on this). I am getting paid to do this, but I am mainly doing this to help in any way I can to help find a cure for this disease.

    Anyway, I would be interested to hear from anyone who has ever done this or something similar and what your experiences were.

    Thanks.

    Ellen
  2. EllenComstock

    EllenComstock New Member

    Hi, Everyone:

    Has anyone ever participated in any FMS research projects? I will be in one studying the sleep problems of FMS at Henry Ford Hospital (located in Michigan) next month. I will be there for four days and two nights. The bad thing is that I have to be off my pain medication for several days before that and the Elavil for possibly two weeks before (they will let me know for sure on this). I am getting paid to do this, but I am mainly doing this to help in any way I can to help find a cure for this disease.

    Anyway, I would be interested to hear from anyone who has ever done this or something similar and what your experiences were.

    Thanks.

    Ellen
  3. allhart

    allhart New Member

    i havent but i would love to be part of something like that you should be proud that your trying to help.im sorry youll have to be off your meds but alest they will have a good idea that pain affects sleep good luck
    kara
  4. diricha

    diricha New Member

    I work in research. A lot of people don't think about the fact that if it weren't for research studies, there would be no new medications. Is the study a drug study or an observational one?
  5. EllenComstock

    EllenComstock New Member

    Hi:

    Thanks for writing. This study is more of an observational one. I am going to be hooked up to wires to monitor my sleep. It's basically a sleep study for people who have FMS. That's why I have to go off my meds so they will get an accurate study of the sleep problems we have. I don't really look forward to that, but I know it's important that people be willing to do this so we can get some answers.

    During the day they are going to encourage me to take naps. The rest of the time I have to just do quiet things like reading or watching TV. I can have visitors, which will be nice.

    Ellen
  6. TiredbutWired

    TiredbutWired New Member

    Sorry I do not have any stories to help but I am trying to get in studies to help.Have qualified for ampligen but have to relocate for 16 months.So I am trying to look into all studies.Thank you for your brave leap of faith.Tracey
  7. LindaD.

    LindaD. New Member

    I already had problems with sleep - the fact that I didn't go to sleep like I should - and the fact that during the sleep (when I did sleep) in an hour's time, I would stop breathing at least 46 times.
    I am now on a cpap machine and was taking Ambein 10 mg. but now my insurance company is being a "turkey" AGAIN (I have more problems with them!) and won't let me have the Ambein but every 10 days - and will still cost the co-pay of $25.00 per each 10 day supply.
    Anyway, it really did me a lot of good to do the sleep study. One was hooked up to all kind of wires and monitored throughout the night for any kind of a sleep disorder - which was diagnosed as sleep apnea - and the other which is post-sleep something - I forgot what she called it - but the help I got helped out quite a bit.
    Good luck with your testing as I am sure that it will be an experience for you - I know it was for me, although mine was for 2 nights. The second night was with a cpap machine which improved my sleep 95% (and I did not have to use a mask - I wore a nasalair tubing, which is much more comfortable).
    Let us know how you did on your study - know I care!
    Love ya,
    LindaD.