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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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"Fatigue" or not fatigue - that is the question...

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Allyson, May 14, 2013.

  1. Allyson

    Allyson *****

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    Hi Soxfan a good tip my sellp doc told me with klonazepam - just bite off the tiiest bit you can wiht your teeth
    i also crush it in my tettth lihgtly as it takes ages to dissovle in water

    often this is nough to get you off - or back to - sleep

    If i really want to sleep and this does not work within half and hour or so i repeat it. and wash it down with another pill like L glutamine that i would be tainkig overnight anyway.

    this limits the amount you take at least; i only do this about once a week or so to prevent depencency

    IM Vit b12 is the best thing i have found for sleep so far though.

    best,,

    ALLy
  2. soxfan

    soxfan Senior Member

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    I just started seeing a new doctor and I am sure in time she will start me on different things for my sleep which is totally I believe the root of most of my problems. I have absolutely terrible sleep....even if I seem to sleep when I get out of bed I feel tired. When I wake in the morning I am ready to get up and sometimes I don't know how awful I am going to feel until an hour or two later. Sometimes it is immediate.
    I have to get off the Klonopin even though it helps me sleep I am tired and dragging all day. I think I am going to go back to either ambien or lunesta as I wasn't dragging all day with those.

    I had 11 tubes of blood taken a week ago for all kinds of things and just had another sleep study so when I see the doc on the 29th I am hoping she will have some answers for me. I do know I have high cortisol at night which is disturbing my sleep too.
    I think I only really get 5 or 6 hours sleep at night and it isn't a good quality so that is most likely why I feel awful all the time and need to lay down in the afternoons. I just run out of steam....I would call my fatigue a deep tiredness...
    Allyson likes this.
  3. Allyson

    Allyson *****

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    oh sympathies soxfan ,,, nothing worse

    i assume you have cut out all caffeine coke etc... and off the laptop by 6pm a the latest
    have you tired a blue light ithe mornings - that helped me a lot befor the IM B12

    ALly
  4. soxfan

    soxfan Senior Member

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    Yeah...have tried just about everything. I am just getting a poor quality sleep for some reason. Hopefully the study will have an answer...if I slept long enough!
    Allyson likes this.
  5. ukxmrv

    ukxmrv Senior Member

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    Fatigue in CFS is often described as not being relieved by rest so that's an important distinction to make when looking at different diagnoses for that symptom.
    Allyson and Valentijn like this.
  6. Allyson

    Allyson *****

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    good luck soxfan - nothin g worse thatn not sleeping so i hoe you find something that helps
    soxfan likes this.
  7. soxfan

    soxfan Senior Member

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    Well....I only slept 3 hours 20 minutes. It wasn't quite as much as they wanted but they did indicate there is no sleep apnea or RLS. I really thought I had slept more than that! Anyway of course since I wasn't actually sleeping very long I had like zero REM and just a little deep sleep between 4:30am-6:15am when I woke up. That isn't surprising though.

    This will be my last study....I apparently just can't sleep hooked up no matter what I take for sleep meds. The doctor is trying some other stuff to try and help me feel rested in the am.

    I want to add that resting or sleeping does not relieve my fatigue....nothing does.
    Allyson likes this.
  8. Allyson

    Allyson *****

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    I hear ya Sox and sorry aobut that

    for my sleep study i could not sleep
    so they said take a sleeping tablet

    i did - then I slept all night 11 30 pm til 6 am

    then they wrote - she sleeps well ( is hence imagining her sleep problems !!! lol )
    soxfan likes this.
  9. soxfan

    soxfan Senior Member

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    Wow...I am impressed you slept so long. I actually took double my sleep meds and still couldn't. Here at home I had been sleeping so well so I was confident it would be fine. I think they wanted to make sure apnea or RLS was not the cause of my unrefreshing sleep and they did determine that so all I know is that my sleep is just not good quality or I am not in the recovery stages long enough.
    Allyson likes this.
  10. Allyson

    Allyson *****

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    Yes a full sleepng tab will make me sleep several hours but i do not want to get dependent on the m so save them for emegrencies. soxfan
  11. Allyson

    Allyson *****

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    as it turned outhey wer ONLY lookig for sleep anea as they di not believe in ME /cfs any way !

    anyway they wer nice and i go back occasionally to educate them....lol

    they did give me ablu light which helped some

    and another doc prescribed IM Vit B 12 which helped a LOT!

    but some places now do the sleep studies at home - they wire you up and and send you home and that woud be better.
  12. soxfan

    soxfan Senior Member

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    They were looking at everything....sleep cycles...oxygen levels...heart rate...etc. I just think my sleep cycles are messed up as I spend too much time in the light stages and not enough in the deep stages. I have no idea why this happens or what can fix it. Since I became sick back in 2004 this has been the case. Although I have to say I do sleep very good on vacation and feel a lot better in the mornings. I am sure that has to do with less stress though..
    Allyson likes this.
  13. Allyson

    Allyson *****

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    Great that it is being looked into - nothing worse then bad sleep - did you used to travelal lot crossing time zones?
  14. soxfan

    soxfan Senior Member

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    No...the only time I get messed up is when we go to Hawaii as it is 6 hours behind where we live. So you are basically re-living the same day over with no sleep but I usually recover pretty quickly on the way there. Coming back is worse for some reason. I am supposed to try L-Tryptophan and Seriphos but have been afraid to....Like I said....I seem to be sleeping well at night and sometimes 4-5 hours before waking and then falling back to sleep so I really have no clue.

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