Does everyone with CFS have sleep issues?

Discussion in 'Fibromyalgia Main Forum' started by jane32, Sep 8, 2006.

  1. jane32

    jane32 New Member

    I know a lot of my sleep is due to anxiety. I don't have anxiety during the day just at night. My stomach starts to flutter and then my mind races. I really want to get away from these meds.

    I was just thinking about how many of us have sleep disturbances. I wonder if most of our fatigue is due to poor sleep.
  2. Bruinz

    Bruinz New Member

    Please have a sleep study done. I had one done and found out I also have sleep apnea in addition to my FM/CFS. Using a CPAP machine was a depressing think at first but the sleep you can get by using one is awesome.
  3. littleleafhopper

    littleleafhopper New Member

    Hey Jane,

    I have a consultation appointment next week for a sleep study. I know that I'm nervous about it because for some reason being observed bothers me, not to mention the multiple times I get up in the middle of the night.

    That may seem silly, but it's held me back up until now. Well, I'll post and let you all know what happens.

    Yours, Lil

    FOYBOYFOY New Member

  5. Rich333

    Rich333 New Member

    I have had CFIDS or CFS or ME or whatever you want to call it forever, at least it feels that way, and sleep disorder was always part of the fun. Pardon my black humor, I am part Irish.

    I recommend doing research somewhere on insomia coping. There are things you can do like avoiding certain foods that bother you, avoiding stimulants of any kind, having a set routine as much as you can despite all the chaos, etc.

    But in the end I have found that it is always a battle and I never really win altogether, just have small victories. But those victories mean a lot to me, sleep is essential for my mental state, my ability to function day to day, and most of all my ability to handle all the pain and stress of this dd.

    Learn as much as you can about what works for you and hang in there.
  6. Marta608

    Marta608 Member

    Yes, I think most of us have sleep issues, Jane, and you're right, a lot of our fatigue is due to not getting the kind of rest we need.

    I suggest that you are anxious during the day but that it's "louder" at night when you aren't distracted. A sleep study might be helpful to rule out sleep apnea (do you snore? that's a clue). I had one done and the dx was anxiety and depression which only convinced my doctor that I was "just" anxious and depressed. I don't know of any sleep doctors who know anything about CFS. You may find differently, however.

    I find that learning to quiet my busy brain has done as much for me as anything. Oh, wait. There is the Restoril..... ;>)


  7. barbinindiana

    barbinindiana New Member

    I have restless leg syndrome, insomnia, and sleep apnea. Was diagnoised with RLS in the beginning of CFS. The sleep apnea started a few years later, and the insomnia started couple of years ago.

    Are there any other sleep disorders I could get? I sure hope not, as with the luck I've had, they'll find me if they're out there! LOL.

    Anyone with FM or CFS really needs to have a sleep study done. It's my understand that if you have one or both of these illnesses you also have a sleep disorder.

    I hope you can get so help with your sleep. I don't think we have a chance of gettting well until we are able to get enough hours of deep sleep.

    Take Care,
  8. jane32

    jane32 New Member

    I read about your bio...I just read an article about formaldehyde(spelling!) They say this can cause CFS or a syndrome similar. I have had my nails done with this chemical for years. I wonder if that is contributing to my fatigue. has been ten years with tips so not sure if I can get rid of them!
  9. jane32

    jane32 New Member

    I agree we can't get better without deep stage sleep but I am not sure if all fo these drugs are the answer. For every drug we put into our bodies we almost need another one to combat the side effects. I have used a lot this year but am really now thinking about going drug free and following a natural path..but i knwo I will miss some of these sleep meds.
  10. bigmama2

    bigmama2 New Member

    I sure have had insomnia for 20plus years! Ambien is my best friend. I hate when my docs wont give me enough of it.

    I was on it for 2 years, in the past, and I had built a tolerence so I had to take 15- 20 mgs. Then it stopped working- after taking it I still couldn't fall asleep, but I would start to have some nice hallucinations and start talking aloud to myself. Yea, that's when I decided to stop taking Ambies.

    That was a few years ago, and now I taake it again. I figure I have a good year or two of being able to sleep before the freaky stuff starts again, so I'm just trying to enjoy it!!! hehehhe
  11. cherylsue

    cherylsue Member

    I had two sleep studies and my oxygen level was tested while I was sleeping. Nothing really raised a red flag with the expensive sleep studies.

    Disordered sleep is one of the diagnostic criteria for CFS.

    I take two St. John's Wort to help me sleep these days. I can't seem to tolerate meds. I sleep with a few awakenings, but I think that the less I worry about it, the better I sleep.

    I read recently that at an AACFS Conference in 2004, sleeping results were modest. It helps, but it isn't the only path to recovery.

    I think the cytokines that are firing in response to some infectious agent that is partying in our brains, keep us from fully sleeping.

    I feel worse at night with flulike feelings and when I awaken from napping during the day. Being awake I actually feel better. This is a paradox, but I think my brain is controlling my illness. I think it is coming from the brain. As the brain heals, we recover.

    Experiment and see what works for you.

  12. goaska29

    goaska29 New Member


    Like you, I have not had to deal a whole lot with pain, but have had sleep issues for so long. I tried melatonin, valerian, lunesta, ambien, xanaz, klonopin...etc. The only thing that has seemed to work really well for me is trazodone. And a nice plus is that it's really cheap. I take 50mg at bedtime and sleep a pretty solid 8 hours now. I never thought that this was a possibility, but I'm pretty happy with the results I've gotten from it. It's not a sleeping pill like the others, so I never get a hungover feel.

    Everything works differently for different people, but that is what my sleep specialist suggested to me after a sleep study.

    Good luck,
    [This Message was Edited on 09/09/2006]
  13. upnorth

    upnorth New Member

    I have CFS and my sleep issues seem minor to me. However, not all sleep studies look at the stages of sleep, some just look for conditions such as sleep apnea.

    I had two sleep studies that were very comprehensive and they indicated that I awoke up to 20 times an hour and had no stage four sleep and little stage three (these are the restorative stages). However, like I said the sleep problems seem to be some of my most minor cfs issues.

    my cfs specialist thinks as many as 90% of her cfs patients have sleep issues

    Every night I take a Gravol which in Canada is an over-the-counter anti-nausea drug for motion sickness. But it works to get me asleep and keep me asleep and I like that it's not a pharmaceudical which I seem to have problems tolerating.

    I'm so so so sorry to hear you've relapsed. It always seemed that we suffered from very similar versions of cfs (predominantly flu symptoms). I was so hopeful that you'd managed to go back to work. On the other side, it seems like a good thing that you're attempting to take disability for a while and allow yourself to heal.

    I'm still on disability but am plugging away at my second term of part-time master's degree. I was super-relapsed for six weeks this summer, however, I've improved considerably and like usual in the fall I seem to have my strongest season which is 50-70percent.


  14. cherylsue

    cherylsue Member

    It's good to hear from you. I'm glad you were able to go back to school and work on your Master's degree. I'm sorry you relapsed in the summer, but it is encouraging that you are on the upswing again.

    I had an 11 month remission and was functioning around 90% or better. But I keep forgetting I am vulnerable, and sort of overdid it. My husband and I were planning a trip to Germany in August, but CFS reared its ugly head again in July, and I'm just now getting out of bed and trying to take short walks down the block.

    Did you ever had burning skin sensations in your arms or back? That's how this relapse started. They are subsiding somewhat, but now I have them burning skin on my neck and face. I seem to get this every time I have a bout of CFS.

    Did they ever find out what is your trigger? I know you suspected viral, but what about Lyme? Were you ever tested for that?

    Best of luck to you.

  15. upnorth

    upnorth New Member

    No, I've never had the burning feeling, however I do get a deep internal tremor/vibration especially in my legs but it can be anywhere. It means I've overdone it usually.

    Your version of cfs sounds very infections with the fevers. Do you know what your triggering infection was?

    My triger was Mono and my titers are still skyrocketed. Recent studies by Austrailians and the CDC indicate that 11% of folks who get severe versions of some infections (including Mono) go on to get cfs. I guess I'm one of those.

    I was tested for Lyme so many times I can't even say (I was a wilderness/outdoor educator for 9 years which is why every doctor suspected lyme). I did have one positive elsia screen, but my specialist reckons it's the fact my immune system functions poorly. I had a positive rumetoid factor once too, but I really get very little pain.

    It will be nice when they finally figure out cfs enough to find some treatments.

    I'm so sorry to hear you had to cancel your trip overseas. I hope you improve over the fall - like I said, I always get my worst relpases in the spring and summer.

    Best of luck
  16. Summit

    Summit New Member

    Eveyone with fibro has sleep problems (some medical professionals say that the fibro is due to poor sleep/not enough rem sleep etc.) and of course you get more achy when you are tired, and get more tired the more you ache, a horrible cycle! I hate taking pills too, but gave in , and take 1/2 tablet Lorazapam sleep pill prescribed by doc. it helps me relax enough to sleep (or at least only wake up once during the night instead of 6 times! Also, many fibro suffers have sleep apnea as well.
  17. Slayadragon

    Slayadragon New Member

    I agree with the fairly accepted regimen of 1-2 mg of clonazapine (Klonapin) just before bedrime. I believe it helps me to get deeper sleep (perhaps through mild anticonvulsant activity), thus relieving the agitated exhaustion.

    Sometimes I add a few drops of a liquid version of doxepin, although that tends to create hangover symptoms.

    If I need to sleep for a short period of time, I will take .5 mg of alprazolam (Xanax).

    Ambien does put me to sleep, but it's not very restful sleep.

    Melatonin is sometimes helpful, especially if my sleep cycle gets out of whack.

    I take St. John's Wort, but I don't think that helps with sleep.

    I sleep fine (9+ hours like a log) with the Klonapin. I'm still tired during the day, but it's not from being sleepy or from not getting enough sleep. My mind feels much clearer than without the drug, too.

    Note that the Xanax and Klonopin do not make me tired when I take them during the day. They only allow me to sleep better when I am already tired (or when it's bedtime). I haven't had any increased tolerance over time.....I've been taking the same dosage each night for about 5 years.

    The Klonopin/Doxepin is an old Cheney protocol. I think it's in Teitelbaum's book, too.

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