Abbylee!!!! Are you out there?

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Nov 13, 2005.

  1. HppeandMe

    HppeandMe New Member

    Hi Abbylee! I have been thinking about you and hope you are feeling well. I keep trying to take the Xyrem for sleep but I feel like what someone probably feels like after taking chemo therapy the next day. It doesn't even give me much relief anymore. That is not why I am writing though. I was hoping you would see my post that reads something like " Good News For All Of Us I Hope" . Something to that nature. I didn't want it to pass you by. I know we have lots in common and I some how feel we are good supporters for each other so I wanted you to see it.

    I hope you missed my break down last week. I hit rock bottom. I still feel horrible but now I have some hope check out my post to see why and let me know how you are doing.
  2. HppeandMe

    HppeandMe New Member

    It's actually called "Good News I Hope for all of us". Let me know if you find it.
  3. HppeandMe

    HppeandMe New Member

    Bumping for you Abbylee
  4. abbylee

    abbylee New Member

    I've been thinking about you lately, too, and I'm sure it's for the same reasons.

    I really think we're worse because everyone seems to be worse, not because the Xyrem isn't working anymore. It's too odd that it would work for a year and a half and then quit working.

    My husband and I went to my parent's house the other day, and my dad gave me 2 canes to try. It's getting to the point that I'm afraid that I'll either fall or get arrested for being drunk!! And I don't drink at all!!

    If I give up on it, all I'll do is sleep. That's the reason I had the sleep study. I couldn't stay awake. The doc told me that if Xyrem worked it would help me stay awake during the day (and that part works), and it would help my pain (and it's done that, too, just not so much right now).

    So I guess if I want to stay awake, I'll have to take it.

    I've added 20 mgs of Lasix to my med diet to help with fluid retention that the Xyrem causes and the bags under my eyes are much better (don't know if we talked about the bags - do you have them?

    PS I did miss your breakdown. What happened?[This Message was Edited on 11/13/2005]
  5. abbylee

    abbylee New Member

    Hi there. Now you're the one who's lost!!

    Hope all is well. We've had beautiful weather here this week which means that I hurt more. Don't know why but when it's warm and sunny I'm tired and achy.

  6. HppeandMe

    HppeandMe New Member

    Good to hear from you. Did you read my post on Kutapressin? What do you think? I am going to give it a try!

    I am so tired tonight and my daughter who is 14 almost 15 is driving me crazy. She has taken all of my energy.

    I have been on and off the Xyrem trying to find something to put me dead asleep. The Xyrem just hasn't been working perhaps it would if I took even more of it but it makes me sick to my stomach already and give me the D word.

    It is so interesting that you are taking it for the opposite reason. As tired as I am all of the time I still can't get to sleep unless I take a bunch of really sedating sleep meds and then I can't get through the day because I am too tired. Your damned if you do and damned if you don't.

    I wonder why they edited part of your message or did you?

    Anyway, hope to catch hup with you soon. Hope you are doing well.
  7. abbylee

    abbylee New Member

    So good to hear from you but sorry you're having a day of it.

    I hate that the Xyrem doesn't work for you. If you could take it for several weeks (6 for me), it will help you stay awake during the day.

    When I took other sleeping pills, they didn't get me to delta sleep so I slept all day, too.

    I asked my doc about your drug and he said it's an anti-viral. He says there's no evidence that fms is caused by a virus so he doesn't give it to his fms patients. He's a good doc but can be a pain sometimes!


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