Why Do So Many of Us Have Sleeping Problems

Discussion in 'Fibromyalgia Main Forum' started by NyroFan, Oct 10, 2006.

  1. NyroFan

    NyroFan New Member

    Hello all:

    I have read some on this topic, but I find most of it confusing (at least for me).

    Why do so many of us have problems sleeping.

    I know I can be active all day and then hit the pillow and be wide awake.

    At other times I can doze right off but wake up at all crazy hours.

    Since on Restoril this has not happened, but I am curious:
    why us?

  2. Kayleen

    Kayleen New Member

    Bio Identical Hormones helped me..also the ionic foot bath.
    I hadn't slept in years. I used to wonder all over the house all night long...then you wonder why you're dead tired the next day. When I went on the hormones I started sleeping alot better. When I started the ionic foot bath I actually slept through the entire night without waking up.
  3. Summit

    Summit New Member

    there was a post talking about antidepressants, and that they provide a chemical our brain is not producing, and that helps us to be able to sleep. So, the antidreprssants are not just for being depressed, but help with the sleep thing as well.
  4. evol_or_revert

    evol_or_revert New Member

    Sleep was a major thing for me. I would be really tired but not be able to sleep.

    There is differently a link between sleeping and CFS as you said so many of us have problems sleeping.

    Though my own studys I think it maybe due to a lack of a chemical in the brain but I'm not an expert on this sorry.

    When I found out what i had straight away I got put on a low dose antidepressant which helped me sleep. First I tryed the normal ones but they made my throat swell so I eventally found Norpress. Been on it two years and as soon as my head hits the pillow im alseep it's really great!!!

  5. snooker11

    snooker11 New Member

    apparently, a lot of people with FM have trouble getting into stage 4 deep sleep. This is probably part of the reason why. When people without FM are disrupted doing their stage 4 sleep, they get FM-like symptoms. I don't think anyone knows for sure why FM people have difficulty getting to stage 4 sleep. Hopefully, in the (near) future this will be discovered.
  6. DorothyVivian

    DorothyVivian New Member

    However, now, since finding the quietest spot in my house to sleep and since taking "Lyrica"..generic is 'Pregabalin'--I sleep for eight to ten hours, and even longer, if I can spare the time.

    I've had this illness, (dx'd as CFIDS and Fibromyalgia), for over 20 years and for the first years, no matter what, I couldn't sleep well--it was as though I was 'wired and tired': sore and swollen glands under my jaw and under my arms, all over aching muscles and joints, continual low-grade temp. of 99 to 100 deg., frequent sore throat and crushing exhaustion and fatigue. And, during those years, the conventional dismissive view amongst most health care professionals was that this was 'Yuppie Flu'. (One media doctor, Dean Adell, 'pooh-poohed' CFIDS and Fibromyalgia loudly and often!) His misinformation did a lot of harm to many, many persons with CFIDS and Fibromyalgia!

    Happily, I have been fortunate to have a primary physician who is the former Chief of Staff of the Allergy and Infectious Disease Dept. of a major medical center in southern California and he was the one who originally dx'd my bewildering condition. His advice and support has helped me to disregard those who wanted to convince me the pain and discomfort I have endured was, and is, in my imagination.
    This intelligent and perceptive doctor advised me to sleep and rest for 12 HOURS OUT OF EVERY 24 over 30 years ago. Of course, at that time, I said I can't possibly do that as I'm a single mom trying to go to school and raise two adolescent sons alone. I sincerely believed I couldn't spare the time to sleep and rest that much. He insisted that I needed to aim for giving myself rest for half a day. That advice probably has made it possible for me to have a fairly rewarding and less painful life.

    One thing I've learned to set aside the anxiety about all the things I need to do..and want to do, is to make a list and then, prioritize the list. I then, take one major thing a day, to do. This technique usually reduces my anxiety and prevents overdoing.

    Nyrofan..and All..I guess what I'm saying is that we with this condition need to develop a different attitude towards work, relaxation, recreation and rest. And to devise ways to reduce our anxiety about work and learn to take life much easier! At least, that's what I've had to learn.

    With love, Dorothy
    [This Message was Edited on 10/11/2006]
  7. Daisys

    Daisys Member

    I have the alpha wave intrusion sleep disorder that is common with Fibromyalgia. I've been on xyrem for about 4 months now, and have been getting the deep sleep I need. I'm feeling so much better, I'm almost ready to declare myself in remisson!

    I just had 2 weeks of very busy travel--3 different trips. I was active, never lost energy, kept up with everyone else and now don't feel like I need to recuperate from my vacation.

    I do still have viral symptoms: chronic sore throat and congested sinus. I also have soreness in my upper back, but nothing like before. I think exercise, like Pilates, would help that.

    I highly recommend to anyone who wakes up feeling unrefreshed, wakes up often during the night, or sleeps long hours and still needs naps to ask for a sleep study.
  8. psychomama

    psychomama New Member

    I could fall asleep, but woke up several times during the night for several years. Then, I started taking melatonin. It greatly helps & also I have to have the room dark as a dungeon & some kind of steady noise, like a fan, in order to stay asleep. When the sun comes up & lightens the room, I am awake. I put a pillow over my head so I can sleep longer. I snore too, so maybe I have sleep apnea. Have never had a test done. I recommend melatonin, Xanax, & Zanaflex (muscle relaxer) before bed.
  9. Daisys

    Daisys Member

    Xyrem is a form of GHB. It's highly controlled. I was apprehensive when I first started it because of it's 'rep' but now I'm comfortable using it. I just don't tell people what I take. It's just my sleep med. (I'd be careful about making it public if I took narcotics for pain, too.)

    People took it for years when it was sold in health food stores. Then it was found to be abused and now it's controlled. So there are people out there who took the drug for years for sleep and have no ill effects from it.

    It has such a short half life that it's totally out of the system all day. Also, I read somewhere that it's so natural to the sleeping mind's makeup, that it can't be tested. It just looks like the chemical makeup of a normal brain sleeping deeply.

    It could not be used as a date rape drug on me. Maybe it puts a normal person into a coma-like state, but I can wake up while on it easier than my husband wakes from his natural deep sleep. If I take my dose and have to stay awake for some reason, I do. It just wastes that dose. So I'm not afraid to take it.

    It's important to cooperate with it: take it and go to bed. If you do have to get up, you'll be in that groggy, lurching state that normal people are in when they first wake up from a deep sleep. They shake out of it in moments, but on xyrem, it's lasts for awhile till the drug dissapates.

    The biggest negative to taking xyrem is the need to very slowly titrate up, so that your body gets used to it before it even gets strong enough to benefit from it. Some people have side effects in the low doses so they don't feel good on it at first, and haven't gotten strong enough doses to sleep well. If they gut out the first few weeks, it's usually gets better and better.

    I'm happy to say I didn't have side effects and even when I was only getting 3 hours of sleep a night, I felt so alert and rested the next day, I knew I was on the right med.

    I hope others with this sleep disorder can get on xyrem. It has truly made a huge improvement in my life.

    [This Message was Edited on 10/13/2006]
  10. NyroFan

    NyroFan New Member

    Hello all;

    I read all of the responses to this post and took notes.
    With all of your opinions, theories and medications used, I can now do some more research.

    I would never have been able to do it without your input.

    I am starting to realize how many of us have this problem.

    It is surely a hallmark of Fibromyalgia.

    I started on Restoril and will see where that takes me.

    It is about my fifth medication change.

  11. kholmes

    kholmes New Member

    It's interesting that sleep problems weren't initially seen as one of the fundamental symproms of CFIDS.

    What's also amazing is that they still don't know exactly what causes our insomnia.

    I agree with Hayley that the brain/neurotransmitter theory seems to be the best, but HPA/neuroendocrine problems, especially in the adrenal glands, can cause insomnia, as can problems in the autonomic nervous system. For some of us, it's sleep apnea.

  12. julieisfree05

    julieisfree05 New Member

    For those who are scared by the GHB and Xyrem thing, I just want to let you know that when prescribed properly it can be a miracle!

    PWFM seem to have Central Nervous Systems that "idle" high most of the time - particularly at night. This prevents us from getting deep level 3/4 sleep. You can take a bunch of sedatives and get knocked out, but without surpressing the CNS, it's hard to get into long periods of level 3/4 sleep.

    Xyrem is NOT a sleep medication or sedative. It is a CNS depressant. A person without a CNS disorder could easily die from taking (or being given) this drug, but if your CNS is "idling" high, it just brings it down to a normal rate, and you sleep.

    I resisted trying it for more than a year because of the "stigma" and fears about abuse, but my FM/CFIDS symptoms have been gone for about a year now, and I was able to discontinue it after less than one year.

    I've been off of it since last February and my symptoms have NOT returned! If you're interested, see my posts under "Xyrem saved my life" for more details about the problems caused by lack of level 3/4 sleep and how Xyrem works.

    - julie (is free!)
  13. victoria

    victoria New Member

    I just posted an article about yellow light & blue light affecting sleep and helping to reset patterns; it may be of help to us too.

    The whole article can be found at science news at:

    all the best,

  14. TAM

    TAM New Member


    I'm really sorry your having trouble sleeping and i hope things get better for you!

    I know i can't sleep well because of all of my daily pain, i wake up usually ever hour each night i get about 2 and 1/2 to 3 hours of sleep daily i hardly sleep at all but thats because of the horrible pain i am in.
    I have tried so many sleep meds it's not funny nothing helps.

    Please realize your not alone i feel for you sweetie i know that does'nt really help but try to be strong i hope and pray you find some way to sleep better soon.

    Take care, please remember how deeply i care about you, tammy.
  15. NyroFan

    NyroFan New Member


    I will check out that website today. Thank you very much for the tip. The colors idea may help.