How Long for Xyrem to Work?

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Aug 6, 2005.

  1. HppeandMe

    HppeandMe New Member

    Hi there-

    I am new to these boards and have been ill for two years. This past 6 months CFS has tried to take my life away and unfortunately it is being to take it away. My house is a wreck, my poor children don't do anything anymore, I am getting ready to lose my occupation therefore my home will follow and god knows what else. I am not scared for me but I am terrified for my children. I cry everyday until I have a headache that I can not handle anymore. I really hope that one day I will get better but it doesn't seem that many do although there is so many protocols. I'm desperate and up to trying everything.

    Anyway, I am wondering for the people who take Xyrem or who take Pregablin how long either or both of these drugs take to find out if they work or not?

    I am going to call my doctor on Monday and have him prescribe them for me and I will report back. He is open to everything.

    Thanks for your answers and your help!
  2. Francey54

    Francey54 New Member

    I don't know anything about those meds you are talking about, but I just want you to know that we here at this site know exactly how you feel. CFS and FM do not have a cure and treatment for it is shaky as best. Some people respond to some meds with mild to moderate results, others get no results.

    Seeing your house a wreck and worrying about your children is something many of us go through. I had to stop working because of all the fatigue and pain three years ago. It has been very difficult economically but I am seeing the light at the end of the tunnel. My hearing with the Appeals judge is this Monday and I am very hopeful that I will finally win my case.

    I suggest you start finding out about financial assistance from your local Social Servcies office. You may qualify for Social Security Income or SSI, Medicaid, food stamps. Because if you are at the point where you are probably going to loose your, job you need a back-up plan fast.

    I feel for you and want you to know that I am here to comfort you whenever you feel the need to write.

    God Bless.


  3. HppeandMe

    HppeandMe New Member

    Thanks for your answer and support Francey. I am really scared now though. It doesn't sound like there is much hope or light at the end of the tunnel and that scares me so bad. I wonder if there were any severe cases such as mine where someone has recovered. If so how? We really need some success stories.
  4. karatelady52

    karatelady52 New Member

    I only take 4 mls and I sleep very well now. I also take Flexeril and Sonata along with it. I haven't slept this good in years and years!

    There IS hope and light at the end of the tunnel. You just need to find the right doctor to help you discover what is going on with your body.

  5. ldbgcoleman

    ldbgcoleman New Member

    I agree with Sandy! Don't give up or accept this as a life sentence fight for your health. Search for the right Dr if you have to go to 100. Good Luck to you! Lynn
  6. HppeandMe

    HppeandMe New Member

    Thanks for the hope Sandy and Lynn. I won't give up! In fact, I received a fortune in my fortune cookie today that states "It is not your character to give up". How weird is that?

    I tried to get Xyrem from the FFC today but my doctor is out of town for 2 weeks and they don't believe the doctor on call is going to give it to me. They will only be willing to give me something else which I have probably already tried. How do I wait to sleep for 2 weeks? ZZZZZZZZZZZZZZZZ
  7. Francey54

    Francey54 New Member

    Dear Hppeandme:

    I am sorry if I gave you the impression that there is no hope for us. That was not my intention hon. What I meant to say was that our illness is difficult to treat but there is always hope. Especially if you are taking something new that I have not heard about, then you have one over me.

    Just wanted to give you some options to help you especially with your financial situation.

    DON'T EVER GIVE UP HOPE, we all have to hang in there. You have all of our support.

    Tender hugs,

  8. ldbgcoleman

    ldbgcoleman New Member

    Francey- No big deal trust me I have felt like giving up more than once. Thank god for my husband and familly! I am getting better. We have to take our health into our own hands! Good Luck to you! Lynn
  9. HppeandMe

    HppeandMe New Member

    No problem Francey. I have been so down I probably took it the wrong way. You are right about the financial assistance. I am so embarrassed by the fact that I have to go this route. I was out showing homes today (as I am trying to keep going so hard) and I almost passed out. I was so dizzy and so hot. I've come to the realization that I must stop. Why does this take so much from so many people. I wish all of the doctors out there would get on here and read about all of us. The majority of us were hard working over acheivers that are losing everything. Sorry to vent!

    Thanks Francey!
  10. Francey54

    Francey54 New Member

    Dear Hppeandme:

    Honey, I know how you feel, you want to do the things you have always done but no longer have the vitality. Same here.

    It is so true, why do so many of us have these health issues. Sometimes I think the enviornment has alot to do with it. The air we breathe, the water we drink, the food we eat, the stresses of life are probably contributing factors.

    Would be good if the doctors read our posts, they would probably be shocked!!

    Wishing you well.


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