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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Crash almost daily

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Andrew, Nov 19, 2012.

  1. soxfan

    soxfan Senior Member

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    I wanted to add that I can never nap either...I just lay there in total physical and mental exhaustion...
  2. MishMash

    MishMash *****

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    Do you remember all the commentary in the media, after the death of Michael Jackson? People were saying he had a death wish, only a suicidal person would think about taking a powerful anesthetic *just for sleep*. I mean, c'mon, it's only sleep. It's not like you need it to live. We later heard that jackson had terrible insomnia, and he was getting ready for a long, strenuous tour, plus many emotional issues. To me it all seemed very rational. Sad, but totally understandable.
  3. john66

    john66 Senior Member

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    I have not fallen asleep naturally in probably ten years. Unfortunately, I dont remember what the feeling of the natural progression of ramping down and sleeping is like. I take 20mg ambien-it is no longer working and the rituals I go to sleep are ridiculous, tens unit, sleep tape. I am thinking of going back to seroquel or klonopin, full well knowing the risks. It always comes back to sleep. Sleep deprivation is used as torture. I feel much empathy for MJ, and all who suffer from this. I feel this is slowly breaking my will, spirit and mind. Rant over.
    taniaaust1, soxfan, vli and 1 other person like this.
  4. Andrew

    Andrew Senior Member

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    Well, tonight there was no sleep. Not even broken sleep. Went to sleep and just nothing. It's almost 6am now and I got out of bed. Sleeping pills, etc. didn't work. This is happening more and more. Also, I have an odd feeling in my body. I wish there were names for this stuff.

    Oh well.
    MishMash likes this.
  5. CallieAndToby

    CallieAndToby Senior Member

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    Yes you described it perfectly. When I lie down I start having really bad ocd/racing thoughts.

    Also, I have really severe daytime sleepiness but all stimulants made me extremely fatigued and tired with really bad tachycardia. They just attribute it to "paradoxical effect" but I think there is more to this. Even B vitamins make me really tired. Hmmmm.
    MishMash likes this.
  6. CallieAndToby

    CallieAndToby Senior Member

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    TERRIBLE. As if we aren't tortured enough.

    Once in awhile I can nap and it makes a WORLD of difference. I mean I feel like a different person. I can think and read and do things...... It's so odd but a nap, even though short, makes me feel so much better.
    soxfan and MishMash like this.
  7. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    To anyone who can't sleep I would recommend trying 1-3 grams of glycine on an empty stomach before bed. It is like switching off the lights. I take it in the form of magnesium glycinate, but pure glycine is also effective.
  8. soxfan

    soxfan Senior Member

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    I am able to sleep with the combination of Kavinace and 0.5 mg of klonopin. When I wrote about wanting to be knocked out I meant when I have the terrible inner exhaustion and inner shaking. It is such an uncomfortable feeling It is almost like torture. I sleep extremely well on my combo of meds..one being an herbal supplement. For years I had sleep problems and I contribute a lot of it to lunesta. I would always wake unrested or unable to fall asleep...waking multiple times. I sympathize with anyone who has sleep problems because I had them for many many years......I would love to be able to nap once in a while..maybe someday.
  9. soxfan

    soxfan Senior Member

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    I haven't slept naturally in over 8 years now..I also don't remember what it feels like to get onto bed and start the progression of sleep...I could list over 20 meds I have tried for sleep in the past 8 years and they all made me feel like crap the next day..or terribly hungover. As long as my combo works I am grateful..
  10. taniaaust1

    taniaaust1 Senior Member

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    That used to happen to me every night.. I wasnt getting to sleep till 6-10am the next morning... with once or twice a week where I wouldnt be able to sleep for 48 hrs or so. Once I went 3-4 days... no sleep at all.. completely exhausted but it was like my body lost ability to be able to go into a sleep state. Then I'd start hallicinating during the day or having vivid daydreams while awake (like existing in two worlds) due to no sleep. I had a stupid CFS specialist and doctors who refused to give me anything for my sleep.. the whole thing was so unhealthy for me.

    Finally a year back.. I finally found a CFS specialist (my 5th? one) who would actually treat ME/CFS symptoms including sleep with drugs.. it was such a relief. (I think its almost criminal what they did to me and wouldnt treat my severe symptoms.. telling me instead to meditate and do a heap of other natural things which didnt work for me at all). It was hellish is the only way I can describe no sleep but so so tired (it was one of the things which lead to me having some mental health symptoms there for a while.. I just COULDNT cope on the hardly no sleep.. this helped to lead me into suicidal states in the past)..

    Fortunately my sleep has really improved with my changable symptoms.. fingers crossed I wont go back to that.. Im even getting away with not taking any sleeping drugs or supplements at all for the past month. Thou I have my prescription sleeping pills (Temazapam) and other things on standby stil (antihistamine and melatonin)l if I need them.
  11. soxfan

    soxfan Senior Member

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    I would love to be able to sleep without taking any drugs. A few years ago I was able to quit lumesta and sleep without taking anything and it made a huge difference in how I felt the next day. I Am hoping at some point again I will be able to sleep without meds...I know it would improve how I feel ..but right now there is no way I would sleep no matter how exhausted I was without help.
    How were you able to sleep on your own?
  12. lnester7

    lnester7 Seven

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    Andrew are you doing better?

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