waking up is H**L

Discussion in 'Fibromyalgia Main Forum' started by kat0465, Nov 17, 2009.

  1. kat0465

    kat0465 New Member

    Does anyone feel extremely worse after sleeping? i can go to bed, not feeling great, but not feeling like im going to DIE, like i do after i wake up in the mornings.

    I don't know what happens when we sleep, but it isn't good. I don't get it.
  2. bakeman

    bakeman New Member

    yes, at the onset I used to have to lie in bed for six hours. my head would be all mixed up. almost as if part of my brain woke up but the rest of it was still asleep. as i have slowly gotten better, the symptoms have improved somewhat but mornings are still difficult. of course the time 9 or 10pm rolls around i feel better but its time to go to bed again.

  3. loto

    loto Member

    I know what you mean.
    I usually don't have any trouble falling asleep. I take my Cymbalta at nite, and it makes me drowsy.
    I usually get woken up a few times during the nite by random noises or my dogs wanting under my covers, but I know I don't get a good sound sleep like I should. I think I've heard that's what the sleep problem with people with FM is.

    I know that when I have taken Benadryl, I wake up feeling really great.

  4. spacee

    spacee Member

    Three tabs of the NADH 5 mg sold here plus a brand name Ultram does wonders in 15 minutes. It is pricey though. Two might do the trick if you are younger (I'm 60). It does something on the cellular level to help with energy.

    I have taken it for about 15 years.

  5. yucca133

    yucca133 Member

    I agree wholeheartedly that mornings are awful. I dread going to bed because just when I'm finally feeling somewhat ok, I have to go to sleep and face fighting through the pain all over again. I feel so guilty for not getting up until 9:00 many days, but I have to wait until the pain meds kick in to be able to move. I find it very depressing. I didn't know about the cortisol levels being different in the morning. Is there anything we can do about that?
    To better mornings! Val
  6. astroherb

    astroherb New Member

    I can only speak for myself; but I have had two saliva cortisol tests. Both showed very low values in the morning (when they should be the highest) and higher than normal values at night (when they should be the lowest). It is part of the dysregulation that is so common with CFS.
  7. bakeman

    bakeman New Member

    I've tried supplementing with cortef and "natural" supps as well as serophose at night. None helped the symptoms.

  8. rockgor

    rockgor Well-Known Member

    a couple years ago I would usually feel terrible when I woke up. Head stuffy,
    brain foggy, spots flashing in front of my eyes, joint pains; not a pretty

    Been much better the last 2 years. I think it's due to some supplements I've
    been taking. Vitamin D3 and grapeseed extract recommended by Jam. Plus
    the B12 patch (behind the ear) and Holy Basil.

    My depression is greatly lessened. I am still taking my AD.

    Hope you can find somethings that will help you.

  9. kat0465

    kat0465 New Member

    although i did the saliva test and i know i have almost NO cortisol in the A.M. i was on isocort for a while,and DHEA also.
    it's hard to explaine the feeling, like a shakey really sick feeling, and usually my heart is real tachy, and skipping beats

    But i do notice also that i usually start to feel somewhat better in the evenings, just when it's time for bed :(

    Rockgor, wher do you find the b12 patch at? is it a script??
    thanks a lot for all the great response
  10. rockgor

    rockgor Well-Known Member

    The B12 patch is worn behind the ear one day a week. Which ear? Doesn't
    matter as long as it's one of yours.

    The patch was advertised on this site for a while, but when I tried to order it
    from ProHealth, I found out they don't sell it.

    There are 3 or 4 sites that sell the patch. All have the same price. $25 for a month's
    supply. Shipping charges vary though.

    No Rx required. Hope it will help you.

  11. nah.stacey

    nah.stacey Member

    Ooops it's "breaking" up is hard to do, Whateeeevvvver.

    Remember the good old days when you felt good enough to sing in the morning? (like when you were six). Just kidding.
    Mornings no longer exist for me. I go from sleep to afternoon, no morning about it.

    Waking up just plain stinks, ranks right up there with a root canal, a c-section and an appendectomy while your still awake.

    Yep, that bad.

    When I was still in the world, I got to the point that I would set my alarm clock for two hours before I had to actually get up. When the alarm went off I would take 125mg of Tramadol and two extra strength Excedrin and promptly go back to sleep before by body realized my eyes had peeped open. Then by the time I actually HAD to get up, my body was nicely tranquilized and it only took me a half hour to reconcile my brain to the remaining pain and the caffeine in the Excedrin was just right to move me from my bed to the bathroom, not yet vertical here, and make an attempt and starting my day. I wasn't actually vertical til about four hours after waking up.

    Nowadays, vertical moments are rather fleeting, and vertical DAYS are unheard of. Welcome to horizontal land.

    Good Luck with that.
    [This Message was Edited on 11/18/2009]
  12. greatgran

    greatgran Member

    I feel terrible in the morning. Not the pain or exhaustion its like I am not here, the heart palps (which are getting to be 24/7) The doom/gloom and dread. Heck, I can't explain it. The only think that takes the edge off is a 1/2 of xanax . I take that the first thing and lie in bed for awhile then try to get up and face the day. Somedays I can somedays I stay mostly in bed.

    Oh, how I remember how I use to wake up and feel so Great but at that time I didn't how great I felt compared to now.

    Kat, I can't explain it but its the pits. Yes, my cort. levels are low in the morning and elevate at night. I hate this darn CFS or whatever it is.

    Don't have an answer but sure can relate.

    God bless,
  13. ladybugmandy

    ladybugmandy Member

    yup...mornings are a worse hell than nights. its weird!

    what kind of illness doesn't respond to sleep? LMAO

    everything about this is surreal
  14. kat0465

    kat0465 New Member

    but theres nothing about this DD thats a piece of cake either, so i guess it's just another Mystery.
    GG, I never thought about taking my Xanax before i even hit the floor, i'll have to try that. Maybe it will make a difference, and i wont feel like im going to die so much.

    seems like the last few months have been a rollercoaster ride, first thought the kidneys were going, that got better not it's the heart acting up again, so i know exactly how you feel :(

    My Bedroom existence is getting more and more also gran, if this XMRV thing dosent pan out honestly where do we go from there?

    Rock-thanks for the info about the b-12 Patch, i didnt know they even made one :)i'll give it a try

    Bless you also Gran :)
  15. wendysj

    wendysj New Member

    Hi Kat0465,

    One of the saddest things I remember when I first got sick was dreading to go to sleep at night... because I knew I would wake up the next day.

    When I'm in a flare (like now) I know that the chances of waking up with stiffness, fatigue, pain and swelling are good. I've had enough experience not to set expectations... I just try to face the sickness as it comes in the morning. This dd is THE most frustrating thing in the world.

    I do take Flexiril at night and that has helped me cycle through the different stages of sleep. It does a world of good.

    I wish everyone a gentle awakening...

  16. caroleye

    caroleye New Member

    Whatta timely post; I was about to start one this morning. I've been dealing with this illness, plus Lupus for over 30 years, but never have I felt so "out of control" as I do now. Of course doesn't help that my husband of 30+ years has disappeared into mid-life crisis & now I'm living alone with these really scary feelings. Plus I'm now in my late 60's.

    First, if it wasn't for my dog, I wouldn't even try to get up. I hate when I know it's time, and what it's going to feel like. Every symptom mentioned, I've experienced. This morning I just wandered around braindead; talking outloud what I should do next; trying to keep on some kind of schedule til I can get my coffee. (being in a new house doesn't help).

    I "know" I'm in dementia, as I make really weird decisions; can't do numbers anymore; and forget something in a "flash". Then about 10/11, my brain starts to wake up with the help of BHI's "Alertness", a fruit pancake & reading some e-mails.

    Then by 2 it's back to bed; not to sleep but just exhausted. Can't tolerate vitamins or supplements anymore; just homeopathics mostly. I've experimented with everything over the many years, and very few things make a difference now. But I do know it's a brain disorder that's not giving our bodies the right signals at the right times.

    I've become fearful of falling now, so I got myself onto a Lifeline, and that helps alot since I'm now alone.

    I'd be curious how old the rest of you are, as it would give me some perspective of how much worse mine is due to age, divorce, moving, etc.

    Thanks & hoping you all find some tools to help somewhat...............caroleye
  17. kat0465

    kat0465 New Member

    i yearn for a good nights sleep, but when i lay my head on that pillow & sigh because it feels good, i realize the morining will be a whole different ballgame :(

    and if i do manage at least 4 or 5 hours of really deep sleep ( almost never now) i will still feel like C**P. it's almost like a severe hangover feeling, very wierd.

    No real Hangovers anymore, the cfs/fibro has even taken having a social drink or just a glass of wine every now and then, one drink and it's like i've been to a frat party!

    (Sigh) ohhh to be just a little normal again :(

  18. Rockismom

    Rockismom New Member

    I agree, I agree, I agree!

    My saving grace is telling myself...
    "At least I'm waking up!"

    Hang in there Kat!
  19. FibroFay

    FibroFay New Member

    I'm 63yrs., nearly 64. Had FMS for 14 yrs. Divorced. I think everything gets worse as we get older. I, too, am beginning to fear falling. Am thinking how to afford a Lifeline.

    Take care of yourself.

  20. Hawkeye

    Hawkeye New Member

    That is exactly how i feel...and people will say why don't you lay down and take a nap? I don't want to start over with the entire "waking up" process. I know I am so much worse since we set the clocks back. Fibro fog is 24/7 for me right now.