Worst Part of FMS; Insomnia What do you do?

Discussion in 'Fibromyalgia Main Forum' started by JohnBee, Mar 19, 2007.

  1. JohnBee

    JohnBee New Member

    Chronic sleep probs? Has insomnia been linked to your fibro?
    What has helped you? I have been dealing with chronic insomnia for 6 years..tried all the sleep meds which only work short term. Benzodiazapines work but have built up a tolerance. Went off benzos 4 months ago, and on to tricyclic med (Elavil. Slept better for 2-3 months, now insomnia is making a comeback. Wish some health care provider knew of a way to beat fibro related insomnia outside of the usual "sleep hygene/sleeping pill" routine. Any thoughts, or stories of success? Thanks. John Bee
  2. hugs4evry1

    hugs4evry1 New Member

    It's always a problem for us....but I take Trazadone for sleep and get at least 8 hours a night now.

    It's made a huge difference in my life, although not a cure, it seems easier to fight the other things when a good night's sleep is just around the corner.

    Elavil will eventually cause weight gain and it's very hard to wean off of. Docs seem to increase the dosage when it stops working.


    Nancy B
  3. JLH

    JLH New Member

    If you have had sleep problems for 6 years, then I assume you have already had a sleep study performed; if not, then you really need to!!!

    While you might not think that you have any "problems" -- that your only problem is not being able to stay awake, you probably DO have one of the many sleep disorders.

    I have obstructive sleep apnea and sleep with a CPAP machine as well as oxygen. My oxygen level during the day is perfect; however, at night it falls below 74; therefore, I need oxygen in addition to the CPAP.

    Sleeping with the CPAP and oxygen has made all of the difference in the world in my sleeping. I can actually sleep now!

    I normally stay up until the middle of the night and sleep until 1:00 pm or so in the afternoons (I'm retired now after working 30+ years, so I deserve it!). When I try to go to bed too early sometimes, I can't go to sleep and I just lie there and watch my TV which is by my bed.

    The TV doesn't bother by hubby because he sleeps in one of the kids' old bedrooms because he snores louder than a freight train which always prevented me from sleeping when I worked--so he moved in another bedroom. He has all of the textbook signs of sleep apnea, but he is too stubborn to go have a test done!

    I still take a muscle relaxer (Zanaflex) at bedtime to help my muscles relax--I have so many back problems in addition to my fibro, lupus, arthritis, and diabetes, etc., that I need it at bedtime.

    Good luck to you,
  4. Michelle_NZ

    Michelle_NZ New Member

    this is one of my worst symptoms - since Sept 2005 I have only slept on average 3 hours per night. Sometimes I get no sleep at all - which of course makes all the other symptoms worse.

    To get my precious 3 hourse I take:
    - Zopiclone - benzo
    - Dothiepin - tricyclic
    - Klonopin - anticonvulsant / anti anxiety
    - Kava - herbal
    - Valerian - herbal
    - OTC sleeping aid - anithistamine
    I also take neurontin, but it doesnt help with the sleep.

    Good luck, I hope someone has some answers. I myself am geting quite desperate for sleep.

    Take care
  5. PVLady

    PVLady New Member

    Yes I have suffered with insomnia for two years now. I am not sure why it started... It seemed to come on quickly and with anxiety.

    I no longer have the anxiety but still have insomnia. I have also been taking Restoril, and Ambien (alternating)

    Currently, I am using 15 mg of Ambien at night. The problem I have is the next day I am sleepy until noon or longer.

    I wish I had a success story for you, but it is good to hear I am not alone. My kind doctor has given me several sleep meds to try such as Halcion, Elavil, Lunesta, Rozerum.

    The only one I tried was Lunesta and it made me sick the next day. (Nausea)
  6. Daisys

    Daisys Member

    I have the alpha intrusion sleep disorder that is common in FM. I had a sleep study that showed I get very little delta wave sleep. For a couple of decades, I slept long, long nights, and woke up feeling like I'd been beat up, and in a stupor with sleep deprivation.

    The doctor first tried various sleep aids, all of which worked for a short while and then started losing their potency. Then he prescribed Xyrem for me, and since then I've been waking up refreshed in the morning.

    Xyrem is a CNS depressant. FM is a problem with the CNS being too revved up to allow the brain to go into slow wave sleep. It was sold in health food stores for years, until it was found to be abused, and is now a controlled substance. Many doctors aren't willing to fill out all the paper work to be able to prescribe this med. Also, it takes time to work up to an effective dose, so it takes commitment to make it work, but when it does, it's the best.

    A brain under the influence of xyrem looks like a normal brain in deep sleep. GHB, the active ingredient in xyrem, is an entirely natural substance that the brain knows how to process. The end products of processing it is water and carbon dioxide. Saline is used in making the product of xyrem--one drawback if you're on a saline restricted diet.

    Taking xyrem for sleep has made the most difference in my quality of life than any other one thing I've used thru 30 years of this illness. All my symptoms got better.

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