Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Fatigue after sleep

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by LifeLyingFlat, Nov 21, 2017.

  1. LifeLyingFlat

    LifeLyingFlat

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    hi everyone
    I have a quick question, when I sleep even if it is for 15 minutes I can barely move or speak afterwards it take 1-1 1/2 hrs to get my function and my body going again. Does anyone else experience this? Or have any ideas to stop it?
    Thanks
     
  2. Sidney

    Sidney Senior Member

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    I certainly experience it – I always just thought that it's part of the package.
    I wish I could be more helpful! :meh:
     
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  3. Scarecrow

    Scarecrow Revolting Peasant

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    That sounds like a sleep disorder, as if your brain is still sleeping, even though you are conscious.
     
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  4. Demepivo

    Demepivo Dolores Abernathy

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    The groggy feeling after sleep normally comes if you wake up in deep sleep...You wouldn't normally go into sleep after 15 minutes except you seem to!
     
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  5. Mesurfer

    Mesurfer

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    I have experienced this for the last 17 years, unfortunately I don't have any answers...
     
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  6. Plum

    Plum Senior Member

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    I get this badly if I nap. Makes the rest of my day horrible.
     
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  7. Jay Dezi

    Jay Dezi

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    What helped immensely with my pain was when I started REALLY regulating my sleep. Wake up at 8:30am, no naps all day, at 8:30pm take 600mg magnesium and 3mg melatonin. No blue light after 8:30pm. And 10mg Amitriptaline at 10pm when I go to sleep. I know that's not exactly what you asked but I found i wasn't nearly as useless in the mornings after doing this for a few months, also my pain dropped considerably! (Ps. I need more sleep than most so you may need to tweak the times a bit, though i found an hour and a half to be a good length between the magnesium/melatonin and bedtime.
     
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  8. PatJ

    PatJ far and free I gaze

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    I get this, although not quite as bad as you have described. For me it's very inconsistent. Sometimes I can nap and then wake up feeling OK, but other times I get sleep paralysis and then feel dismal when I finally wake up. My coordination is much worse, brain fog is increased, and sometimes it's as if all my nerves are full of static electricity causing me to feel a kind of internal trembling. It usually takes a couple of hours to feel normal again.
     
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  9. andyguitar

    andyguitar Senior Member

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    Might be that the only solution is not to have a nap.
     
  10. Scarecrow

    Scarecrow Revolting Peasant

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    I've never experienced anything like this but I find it very interesting.

    The usual descriptions of sleep paralysis indicate that the paralysis only lasts a short time. It sounds horrific to be experiencing this for an extended period.

    Are the symptoms following paralysis of the same quality as the general ME groggy hangover but more extreme, or are they subtly different?

    Has anyone seen a sleep expert? They'd probably psychologise the hell out of you, so just asking, not suggesting it.

    I'm wondering if this is related to sleep deprivation either in quality or quantity.
     
  11. PatJ

    PatJ far and free I gaze

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    I get the sleep paralysis for seconds to minutes. I remember one person on PR who said she experienced 1-2 hours of sleep paralysis every morning.

    Sometimes I also get stuck in a dream loop where I imagine that I've woken up but have to struggle to move due to sleep paralysis. Once I finally get moving the dream resets and I'm paralyzed again, struggling to move again. I usually go through a couple of loops before resuming normal consciousness and being able to move, other times I go through ten to fifteen loops. It's a very weird semi-conscious dream state. I wonder if it's my mind's way of dealing with a stubborn sleep paralyzed body that won't start moving properly after sleep.

    There's a different quality to the symptoms. I can only imagine this, but I think it may partly be how a body feels after someone has had a general anaesthetic.

    I haven't. I'm fully housebound and partly bedbound much of the time so I can't even see a regular doctor, let alone a sleep specialist.

    I've had occasional episodes of sleep paralysis for my entire life but they increased as my ME progressed.

    I can also start to dream far more quickly than normal, sometimes within a few seconds of falling asleep. I know this because I sometimes nod off, dream, and wake up to find that only a few seconds or minutes have passed. (See below for probable explanation.)

    I know I'm more likely to experience sleep paralysis if I'm unusually tired. And my sleep is dismal without supplements (see my signature for what it takes for me to get better, but not normal sleep).

    It might be related to "secondary narcolepsy" which can occur with damage to the hypothalamus according to this site. Since ME involves HPA disfunction maybe some of us have secondary narcolepsy as a side effect.

    That page also mentions muscle weakness in some forms of narcolepsy. I've read that Jen Brea would experience such sudden muscle weakness that she could barely move. I wonder if it's related to narcolepsy or something like it?

    From the site linked above:
    "In people with narcolepsy, the regulation of sleep is disrupted: the boundaries between wakefulness and sleep are less distinct, and elements of sleep and wakefulness can mix together."

    The site also includes an interesting table listing common symptoms of narcolepsy. I've got all of them.
     
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  12. PatJ

    PatJ far and free I gaze

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    I think this probably qualifies as "hallucinations", plus sleep paralysis, which are both listed as narcolepsy symptoms on the Understanding Narcolepsy site.
     
  13. Scarecrow

    Scarecrow Revolting Peasant

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    Since the OP, what has struck me about this thread is the number of people replying and identifying given the vague tile - 'fatigue after sleep'. From a quick search, sleep paralysis does seem to be more prevalent in groups who experience poor sleep, so no surprise that many here will be affected but I don't see any descriptions of a sleep paralysis postdrome. So that does seem unusual.
    It wouldn't surprise me if this phenomenon is more likely the more severe your ME is. I do wonder if it has ever been noted by researchers but I suppose ultimately the solution is to fully normalise sleep (dare to dream!) and there is existing research interest in that.
    That occurred to me, too, when I was reading the link in the first post. Seems likely.

    p.s. Interesting blog about better sleep. I know just what you mean about the intermittent consciousness, it's even worse than outright insomnia. I don't have such a long list as yours but we definitely have some in common.
     
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  14. perchance dreamer

    perchance dreamer Senior Member

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    @PatJ, what you are describing does sound like narcolepsy. I used to have N., but it was likely from a brain injury. My N. went away when my brain apparently healed from the injury, according to my sleep doctor. It's not common to recover from N., but it does happen.

    The first time I experienced sleep paralysis it scared the hell out of me because I thought I was dying. My S.P. was always the onset of what seemed to be out-of-body experiences. Once I realized I wasn't dying, I really loved these experiences. I wrote on another thread that although they had a physical origin, that doesn't mean there isn't some other type of meaning associated with these experiences.

    Anyway, when I had S.P., it was always accompanied by a vibration that originated at the base of my spine and moved up to the top of my head, at which point I seemed to detach from my body. I've since read about the chakras and the rising of the kundalini, which seemed to match with what I was experiencing.

    Although these were N. hallucinations, it is interesting to think of other meanings they might have such as the nonlocal mind. I find it all unknowable, but feel lucky I experienced them.

    Have you ever had similar experiences to what I'm talking about when you've had S.P.? I'm glad that although you have S.P., you have found methods of getting better sleep, which you describe in your tag line.
     
  15. LifeLyingFlat

    LifeLyingFlat

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    it seems to have got worse the last few months and i can't seem to find an answer. My joints are also agony after I wake up its horrible :( thanks for all your ideas, maybe it's just one if the bizarre things that happen with this illness.
     
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  16. Scarecrow

    Scarecrow Revolting Peasant

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    I forgot to say earlier, as someone who's had a general anaesthetic, that does make sense. All we need now is someone with experience of both.
     
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  17. Scarecrow

    Scarecrow Revolting Peasant

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    It is quite common with ME/CFS to wake up with joint pain but if you are in a position to, you should get checked for inflammatory arthritis just in case.

    Failing that, waking up in pain can be a symptom of poor sleep, so if you think that could be a factor that's something you could try to improve. It's so easy to give that advice and so hard to achieve but PatJ has some really good suggestions in his blog.
     
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  18. LifeLyingFlat

    LifeLyingFlat

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    Yes I am still trying to sort my sleep out, it's taking a while but I will get there!
     
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  19. PatJ

    PatJ far and free I gaze

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    Erica Verrillo's CFS Treatment Guide 2e has some interesting info about sleep and ME. I have added titles for each excerpt for anyone who has trouble with reading blocks of text and just wants to scan for an interesting excerpt:
    And some information about hypnagogia:
    Anti-cholinergics and sleep paralysis:
    Dysania sounds similar to what @LifeLyingFlat has described:
    There is more information, including treatment options (mostly pharmaceutical but some herbal) available in the CFS Treatment Guide 2e. It's only $3.99 on Amazon as an ebook and is absolutely stuffed with useful content.
     
    Last edited: Nov 24, 2017
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  20. PatJ

    PatJ far and free I gaze

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    I haven't had experiences like you've described, but they sound interesting, especially the potential link with the chakras. I have a spinal cord injury so maybe that would influence/impair energy flow in my spine.

    My experiences with S.P. have always been unpleasant, with an extreme desire to get out of the paralysis.

    The hypnagogic states I experience (without sleep paralysis) aren't bad, except for the fuzzy brain feeling afterward, but they lack the connectedness that regular dreams have. They're more like my mind shooting out fragments of dreams or thoughts, or as if my usual conscious control that allows for directed thought becomes so relaxed that background thoughts start to compete with each other for attention.
     

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