To - hppeandme

Discussion in 'Fibromyalgia Main Forum' started by abbylee, Oct 14, 2005.

  1. abbylee

    abbylee New Member

    Thanks for responding to my post. I don't know what to do. My sleep study showed that I had alpha intrusion. The doctor said that I was in delta sleep for only 20 minutes the whole night and alpha waves interfered 38 times.

    According to what I've read able sleep stages, we're supposed to cycle in and out of all of them several times a night.

    Before I was given Xyrem I was sleeping all of the time. I fell asleep in restaurants, at the movie, anywhere and anytime. I thought I had Narcolepsy.

    There are no other sleep meds that I can take. Either they make me walk the floor or they have to be increased every 2 or 3 days - which isn't something that we can do.

    So what are the choices? I'm hurting like I always did again. It's a beautiful day here today. The temp is 78 degrees, the sun is out, the humidity is 52%, we have a light breeze, and the pressure is 29.9. At 3:30 I took 2 oxycodone tabs (30 mgs. each) for severe pain. I don't know when I've hurt this much. The oxycodone isn't working.

    And I've then there are the other problems I've just developed. As I said, I don't know what to do.

    What are you going to do?

  2. abbylee

    abbylee New Member

  3. HppeandMe

    HppeandMe New Member

    I am praying for all of us. I went to this healing thing today at a church. I was so emotional becuase it was imazing to see all of the sick people. The newspaper was there and asked me about myself and if it worked. All I said was that I felt a little bit more alert. I am in so much damn pain though. I really need to to take Oxycodone as well. I actually took some when my husband had a motorcycle accident and they are much more helpful than the Ultram. The Ultram don't work for me anymore. Oxycodone is not the same as Oxycontinin is it?? Anyway, I want to ask my doctor for it but I don't want them to think that I am a junkie. I have been to the FFC and to the world renowned Dr. Teitelbaum and nothing seems to help. I am 31 now and have been suffering for two years. My husband has been talking to another woman. I asked him to leave finally but my 8 year old cried uncontrollably and it broke mine and my husband's heart so we agree to go to counseling. I am the bread winner in my house and I am just afraid I am going to lose not only my house, husband, but my kids as well. Of course they would prefer to live with a well father than an ill mother. I feel so lonely and I am so angry. I don't feel like I can live the rest of my life this way. I thought that the Xyrem would work. I really believe that the treatment for this is a good nights sleep every night. I find that I still wake on the Xyrem and once I am awake after the 2nd dose I can't get back to sleep. The Xyrem seeems to intensify the pain not make it better. I think I am going to go back to Dr. Teitelbaum and see if he can work up some concoction to help me sleep. At least then I can function. About a month ago I was on Restoril and for 3 weeks I slept and felt better than I have for 2 years. I thought oh thank you!!! I am finally going to be well but then it just stopped working. It really makes me angry that no one is doing anything about this. I read once in a book that people with CFIDS, Fibromyalgia, and Lyme disease feel like people with AIDs a week before they die. If I find the secret I will share it with you. If you find something that works please do the same for me. By the way, what have you tried??

    Much Love to you Abbylee!!!!!
  4. abbylee

    abbylee New Member

    That can only serve to make things work for you. Why don't you give the Xyrem a little more time, and why don't you change your dose?

    Oxycotin and Oxycodone are different drugs. Oxycotin is timed released and is much sought after on the streets. Oxycodone is good for breakthrough pain so they say, and is more long acting.

    My doc gave me a choice of Oxycotin or Methadone. I stayed with the Methadone because of the side effects of oxycotin. And as I said, oxycodone is for short-term pain.

    Have you thought of changing docs?

  5. HppeandMe

    HppeandMe New Member

    I have gone to so many docs I just don't know what to do. I am starting to feel hopeless again! I just need some real sleep and I know I would feel better. Maybe I should go back to Dr. Teitelbaum. I am just at a loss!

    I feel like I am really sleeping on Xyrem for a while but I am still feeling awful the next day. I went up on my dosage and I can't concentrate during the day. It makes you feel really out of it. You damned if you do and damned if you don't!
  6. abbylee

    abbylee New Member

    Hi again,

    I forgot to answer some of your questions. I take Methadone for chronic pain. I take 20 mgs in the morning, another 20 in the afternoon, and 40 at night. My doc has no problem giving me that drug because it doesn't give me a "high." In fact, it does nothing to my "head." Many docs will use it just for that reason.

    I use oxycodone for breakthrough pain. He gives me 60, 30 mg tablets per month.


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