Anybody else who doesn't have sleep problems?

Discussion in 'Fibromyalgia Main Forum' started by shrtcak81, Jan 30, 2007.

  1. shrtcak81

    shrtcak81 New Member

    I'm really confused. Everywhere I read about fibro, it says that most people have sleep problems. I don't have sleep problems. I can sleep the whole night for 12 hours sometimes. I know that I reach stage 4 sleep because I dream almost every night. My problem is waking up in the morning. I never feel refreshed, I'm always stiff and it's so hard to get up and moving. I even bought a foam mattress topper and I don't feel any different when I wake up. Is there anybody else who has fibro and doesn't have sleep problems? Can you sleep for long periods of time and don't feel refreshed when you wake? Thanks!

  2. jole

    jole Member

    Even worse, I swing between wandering the house for hours in the middle of the night unable to sleep for weeks on end, then suddenly not be able to stay awake for weeks on end.

    It is just the most maddening thing!! When I "sleep" it's like I can't wake up, and the fatigue is overwhelming. I have no choice BUT to sleep - sometimes up to 18 hours a day. Then in a few weeks back to the being so exhausted and not able to sleep. This is when my pain levels are at an 8 and I just cannot function, so either way, it seems as though I'm scr*wed.
  3. roge

    roge Member

    you dream in REM stage , a very light stage of sleep and supposedly good for memory recall and pscyhological well being and while an important stage of sleep, I would argue the 2nd most important one , after stages 3 and 4 of Non Rem sleep.

    Non rem stage 3 and more so stage 4 is slow wave sleep (delta) or deep and is restorative where the body repairs itself as well as many other important things occur (ie. GH secretion). Most FM as well as CFS have problems getting deep sleep but in addition some also have the more common sleep disorders of apnea, rls, plmd, and other myoclonus spectrum disorders hypnic well as just plain old classic insomnia.

    So yes , you can sleep for 20 hours straight and wake up like a mack truck ran you over if you dont get slow wave sleep.

    I have read from people as well as doctors , that certain meds increase slow wave sleep, but I have yet to find a study that shows this. Same goes with natural meds, many say increased seretonin and or melatonon and you will get deeper sleep, maybe but still would be nice to see some studies. I dont understand why there has been no studies on meds seeing if and how well they increase slow wave sleep. If there are some out there, please let me know.

  4. ashleymarie

    ashleymarie New Member

    I used to have the same sleep situation. This was mainly in during the time leading up to actually being diagnosed with fibro, when I first started getting sick. A few months later I began having problems falling asleep, and on the rare occaisions that I could fall asleep, I couldn't stay asleep. I would normally "wake up" (although I was never actually deeply asleep) about once an hour for the entire night. My Dr. put me on sleep medicine, starting at a low dosage. I had to steadily increase the dosage to get things just right. For the time being, I've been able to sleep pretty darn well and feel pretty decent the next morning. Of course, this isn't the case every single night, but it's better than what it used to be.
  5. engles

    engles New Member


    I'm actually on this site now cause I can't sleep a lick. BUT, when I finally do, I can't get enough and can sleep for awhile. I always dream, too. BUT, I heard that if you remember your dreams, then you have woken up in the middle of them and haven't reached a certain point of sleep (the REM dude knows all about that). I rarely, if ever, wake refreshed. And, yes, the common phrase would be "I feel like a Mac Truck hit me!" I don't take meds or anything, so far, I'm just dealing with it...

    words of wisdom welcome!

  6. captainbws

    captainbws New Member

    Hi, I'm new! My sleep and depression improved when I started taking 5HTP, which is a precursor to seratonin, I'm told. I also take GABA as a seratonin support. I'm quite sensitive to sudden noises and the GABA helps significantly with this too..........5HTP and GABA are available as supplements.....Of course getting not too much, but not too little exercise makes a difference.....I also take 5mg of lithium twice a day, which helps my depression. My ancestral background is Scandinavian which can make for a genetic imbalance of lithium. This small dosage really makes a difference....My best, Tim
  7. jackrorabbit

    jackrorabbit New Member

    actually dreams occure in stage 1 and REM. Stage 4 is where muscle repair and engery replacement occure, so you might not be getting into that stage even though you think you are. Ask your doctor about having a sleep study done they can tell you for sure.
  8. fungirl2100

    fungirl2100 New Member

    This is especially for the user calling themself Jole.
    When you get up & move around that actually makes it worse on your legs which is why you end up wandering around for hours. Try to relax..prop your foot with pillow(s), pop in a movie to try to distract you. Ice your legs down to get the nerves to calm. Always make sure you take your sleep meds before bed. Try a nice warm shower before bed.

    Those are some hints I hope will help you. I have had a horrible RLS flare. It's hard to calm down, but you really shouldn't fight it because if you give it a chance to fight you it will win.

    your friend,
  9. Daisys

    Daisys Member

    The very fact that you sleep for 12 hours and wake up unrefreshed shows that you have a sleep problem.

    Dreaming, as already mentioned, isn't the same as the deep, restorative sleep that we need.

    I was in the exact same condition as you describe. A sleep study showed alpha wave intrusion, which interferes with the delta, deep wave sleep. I got 0% level 4 sleep. This is very common with FM/CFS.

    The doctor first tried herbs like valerian, then various sleep aids that don't change sleep architecture. A lot of sleep aids make you have less deep wave sleep. Some don't change your natural mix of sleep waves. Only one gives you more of the deep wave sleep--xyrem.

    Nothing helped me until I started taking xyrem. It lowers the CNS, which allows the brain to go into the slow, deep wave sleep. Now I get 8 hours sleep, wake up refreshed, without stiffness, and I never need a nap. I've definitely been healing since taking it.

    When you go to your doctor, I suggest telling your doctor that you get no refreshment from sleeping even 12 hours. That should clue them in that you need better quality sleep. A sleep study would show the problem to those who know to look for it.(The 2 different sleep specialists who ran the sleep tests on me didn't see it, but my doctor who understands this condition caught it, and put me on xyrem).

    Hope this helps. :)
  10. fungirl2100

    fungirl2100 New Member

    Perhaps a sleep study will help, perhaps it won't. I know many whom have paid a great deal of money for a sleep study test & after staying up for hours on end & enduring a somewhat painful type of test didn't get much result. May want to check with your insurance co. on that before setting up an appt for one. Do research on it first. Talk to your doc. that would be most important before jumping head first into a sleep study!!

    your friend,
  11. shrtcak81

    shrtcak81 New Member

    You guys are awesome! Thanks for your replys. I didn't realize that even though I'm dreaming, I may not be getting stage 4 sleep. I'm going to my rheumy on the 14th of Feb. I'll ask him these questions.

    Thanks Daisys for your reply. I'm wondering if I should get a sleep test done. If not, maybe I could just try the med you mentioned, Xyrem and see if it helps. Thanks again!

  12. Daisys

    Daisys Member

    About getting on xyrem. It isn't as easy as it should be.

    It was sold in health food stores for years. After it became known as a date rape drug, it was pulled and is now strictly controlled. A lot of doctors won't go thru the hassle of applying for it. A lot of insurance companies won't cover it. (Mine does, whew!--it's expensive!)

    It really is the best sleep medicine there is because of getting you into the deep sleep. There are trials going on right now to see if it works for the sleep disorder of FM. It sounds like the trials are proving that we need it. I've heard it said that it should become on-label for FM soon. Hopefully, then doctors and insurance companies will cooperate better.

    As for the date rape part of it, maybe that's true for normal people, but it just helps me sleep. I can wake up, and even get up if needed, but I have to be careful because I'm clumsy until it wears off. The longer I take it, the better I sleep, and hear that sometimes it retrains the brain. (Julieisfree! had that effect on it.)

    It's the single most important thing I've done to get better.
  13. KMD90603

    KMD90603 New Member

    I don't have any sleep problems either, that I know of. I've never had a sleep study done, though. In my case, I can sleep for 8 to 12 hours in a row and still wake up feeling like I've only slept for 4 hours. And even the nights that I do only get 4 hours of sleep, which is rare, I feel exactly the same. So I know that it has nothing to do with me sleeping too much or too little, lol.

  14. Daisys

    Daisys Member

    Anyone who wakes up in the morning unrefreshed (still feeling sleep deprived, achy, hard to get going) needs to look into the possibility of a sleep disorder.

    If you don't have sleep problems, you sleep about 8 hours and wake up feeling better than the night before, and alert.

    If you wake up unrefreshed, you need to tell your doctor about it, because you do have sleep problems.

    I thought I was sleeping because I was 'out' for hours, but a sleep study showed I was staying in a light sleep, which is why I was waking up groggy and achy. There's different reasons for not getting the refreshing sleep and a sleep study is the first step for getting help.
  15. dvdav2000

    dvdav2000 New Member

    I had a sleep study last week, and... I was told that even though I was observed " sleeping " I did not get any stage 3, or 4 sleep... none...

    I was skeptical about sleep studies, and now my Dr. , and I will figure out what is next.

    I take Ambien, and the sleep study Dr. said that Ambien may bounce you in and out of the 3, and 4 sleep... they reported that after the study... however when I went for the study they said to take the Ambien so they can get sleep data... oh well...
  16. Lichu3

    Lichu3 New Member

    According to Teitlebaum, Ambien, Desyrel(trazadone) and Klonopin (clonazepam) are the only sleep meds getting you into deep sleep. (This is before the newer sleep meds came out though). I agree with him.

    I take trazadone 50mg at night and sleep very well (straight 8-9 hours) so far although I still don't feel very rested in the AM. However, my brain fog has decreased a lot in the morning. A caution with trazadone is that there is a 5% risk of orthostatic hypotension but usually not a problem if you are taking it and then lying down to sleep. It is also non-addictive and people do not usually get tolerant with time. Finally, it's an old med so may be much less expensive and covered by insurance compared to others.
  17. shrtcak81

    shrtcak81 New Member

    I suppose I may need to go through a sleep study. What do you have to go through when doing this? Besides Xyrem, is there another sleep medicine that helps with deep sleep and feeling refreshed in the morning?

  18. Daisys

    Daisys Member

    Hate to say it, but many doctors are not familiar with alpha wave intrusion (of FM), and don't know to look for it on the test results. Even a lot of sleep specialists don't know about it. Even when they see the 0% delta wave sleep, they don't know to address it as a problem.

    I found a doctor who practices the Teitelbaum protocol and he was a great help.

    First he tried to see what would work for me: 5htp, valerian, GABA, ambien, trazodone, klonopin, and finally, all together--ambien,trazodone and klonopin each night, and none of them worked. I know others who post on this board have success with these aids. Others find they have sleep apnea and get fitted for a CPAP machine. I'm so glad I was able to get on xyrem, because I've been sleeping great on it.

    I guess the key is to get a doctor who understands sleep disorders, and understands CFS/FM too.
  19. JaneSmith

    JaneSmith New Member

    I take .5 mg. of Ativan before I go to sleep. I should be taking 1 mg. but I'm sensitive to meds. I get 7 hours of sleep a night. Before the med. I got 4 hrs. I went to work and saw floaters and was in extreme body pain. Now I just feel like I did 25 years ago when this whole thing started. Much better..........and that is not saying a whole lot:)))))-
  20. shrtcak81

    shrtcak81 New Member

    What's the sleep medication that works for you?

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