Does anyone else go from no sleep to not being able to stay awake

Discussion in 'Fibromyalgia Main Forum' started by jole, Jun 4, 2006.

  1. jole

    jole Member

    I have FM, there's no doubt about it. But I also wonder if I might have CFS. When I first became ill and diagnosed (4-5 years ago) I couldn't sleep at all. But in the last year or so, I go through several months at a time of totally dragging my butt out of bed, and being sooo tired that I can fall asleep at my desk.

    Some days I barely make it through a shower and I'm back in bed to sleep till noon, up for a couple hours and back to bed till 6 p.m., up till 8:30 and back to bed for the night. I can hardly walk, think or talk because of the severe fatigue. this will go on for a couple days then I can manage getting back to work for a few days, but will be in bed by 6 p.m.

    During this time I can't concentrate, am too tired to carry on a conversation, and really don't care what is going on around me. It's not always even when my FM pain is at it's greatest, so I don't think it is a part of a flare, it seems different than that.

    Then for no reason, it will let up for weeks, and I just have the severe pain, only for the severe fatigue and "sleep of the dead" to hit again.

    Anyone have any suggestions? Just part of FM or something else?

    Frineds- Jole
  2. jole

    jole Member

  3. blizzybear

    blizzybear New Member

    THAT IS EXSACTLY HOW IT STARTED WITH ME. I FELT LIKE I NEEDED TO LAY DOWN AND COULD DO NOTHING ELSE. I HAVE HAD IT FOR 8 YRS NOW. THE BEST I CAN TELL YOU IS LISTEN TO YOUR BODY AND REST. I HAD TO LEARN TO PACE MYSELF. CRASH AND BURN IS THE FIRST PHASE. I DID NOT KNOW AT THE TIME SO WHEN I FELT GOOD I PUSHED IT TO CETCH UP THEN I CRASH AGAIN. YOU NEED TO MAKE A ROUTINE WHERE YOU REST REGULALRY EACH DAY EVEN WHEN YOU FEEL GOOD OR YOU WILL JUST CRASH FROM OVERDOING IT. PAY ATTENTION TO ACTIVITIES THAT MAKE YOU FELL EXHAUSTED. LIMIT THOSE. DO NOT PUSH YOURSELF WHEN YOUR FATIGUED LET YOUR BODY REST IT OUT. IF YOU PUSH YOU END UP MUCH MORE MISERABLE BECAUSE YOU GET THE FEELING OF NOT BEING ABLE TO HANDLE ANYTHING OR FUNTION AT ALL. MY BODY WILL SHUT OFF LIKE A LIGHT SWITCH AND I CAN NOT EVEN GO TO THE BATHROOM TILL I REST ENOUGH TO MOVE AGAIN. PACE YOURSELF AND REST A LOT , IF YOU ARE AWARE NOW YOU MIGHT BE ABLE TO KEEP IT FROM GETTING WORSE. MY THYROID WAS HYPER SO THE DRS FOCUSED ON IT AND DID NOT REALISE I HAD THE CHRONIC FATIGUE THE WHOLE TIME. I PUSHED MYSELF AND MADE IT WORSE BY THE TIME THEY REALIZED WHAT WAS GOING ON.I NOW KNOW IF I GO FOR A WALK AND FEEL BAD TO MAKE IT SHORT REST. MY AVERAGE DAY IS WALK FIRST WHEN I HAVE MY BEST ENERGY IN AM IF ITS A GOOD DAY, REST, RUN ERRANDS OR WORK, REST, THEN DO PM TASKS, I USEALLY HAVE 1 TO 1 1/2 DAYS A WEEK I JUST REST OR I WILL CRASH. WALK AS EXERCISE, SPREAD OUT CHORES OVER THE WEEK, EAT HEALTHY, AND REST. I HOPE IT WILL PASS, SOME PEOPLE GET FOR A YEAR OR TWO AND IT GOES AWAY AGAIN. TAKE CARE BLIZZY
  4. cerise

    cerise New Member

    Had ME/CFS since 1987. The FM didn't come about until after 1990 (post-traumatic -whiplash injury 2x).

    I can say that what you described is something that I have been going through since the beginning. The frequency, duration and intensity of some of my symptoms change over time, but that is one factor that has remained consistent all the years.

    It is for this very reason that I asked my doctor for a Rx for Provigil which I have been taking for just over a month.

    You have to listen to your body & I would see a specialist (Infectious Diseases or Immunologist) about having ME/CFS.

    For your sake, I sure hope you don't have it. Best wishes!
  5. jole

    jole Member

    I really had no idea what it felt like for you with CFS/ME. I've had fatigue with the FM before, but this is different, and more than just being totally tired. It's to the point of being too tired to get a good breath sometimes. Make sense? It's just as depressing as the pain and fog, which means feeling 3 x as depressed now. And that's WITH the Lexapro 20 mg.

    I honestly think my days of work are limited. It just gets so hard, and no one understands why I sleep all weekend, but if I don't I can't begin to make it to work on Monday. seems my body takes more rest than I have time to give it.

    Thank you again. I know how important pacing is. It's just that my day doesn't allow for naps during the week, and I hate with a passion going to bed at 6 p.m. just so I can make it to work another day. Will see my doc once again.

    Friends - Jole
  6. Marta608

    Marta608 Member

    Yep. That's what I've done for the past 11 years. Of course you have to check with your doctor for yourself but it sure sounds like CFS. For me, it's related to some degree with a push/crash cycle. I do too much on the days I'm not sleeping so I'm trying the 50% rule (do only 50% of what you feel you can do). HA.

    Marta
  7. Mar19

    Mar19 New Member

    Jole

    My entire life has been a cycle of this. I had to stop working in '98 when it all got too severe to handle.

    There are very few days in my life when I have "normal" sleep patterns. Depressing, you bet.

    I know what you mean, also, by being so tired that it's even hard to breathe. That's how I was feeling these past couple of days. Thank God breathing is part of the autnomic nervous system!! It's in the times of this extreme, exaggerated fatigue that I just want to cry -- but I can't. Don't have the energy. :) or :( ???

    Love and blessings
    Mar
  8. WoodstocksMusic

    WoodstocksMusic New Member

    I began slipping into the sleep for 20 hours a day phase.

    It began slowly with me coming home from work to go straight to bed so I could drag out the next day.

    After a year of this I begin missing a day a week so I could get extra rest...

    About this time I was dx w/ fibro. I fought on for about another year.

    Finally I quit work thinking I needed the recovery time..I soon became completely bedridden... this lasted for over a year before I crawled out the other side of the fatigue.

    Now the cycles are not so long... I will spend a couple months sleeping extra...14+ hours a day... then I will slip into a few weeks where I run on 3 to 5 hours of sleep a night and feel sleepy all the time but unable to sleep at all!

    I just shrug it off as CFS part of FM and sleep more when I need to sleep and call the doctor for sleep aids once I get into my 3rd week on little or no sleep druing a 72 hour period and realize that if I do not get some sleep the pain will return!
  9. bigmama2

    bigmama2 New Member

    Hi Jole, and everyone,
    I also go thru weird and annoying phases of severe insomnia, alternating with total crazy amounts of sleeping (I call it hibernating), and then sometimes get lucky and sleep like a normal person. Of course you can never tell which way it's going to be each nite. Drives me crazy!
  10. carebelle

    carebelle New Member

    I have FM/CFS and it sounds like you may also.
    One of the problems we have is not getting into a deep sleep for enough hours a night .

    We are not able to build up our systems with the things we need like serotonin(IM not sure I spelled that right).A lack of serotonin can also cause pain.

    Because I lay awake for so many hours a night. I never feel rested when I get up.So I want to sleep more.
    Your doctor may want to do a sleep study.