[Poll] How does exertion affect sleep? (Read instructions in first post)

How does your sleep change on the first night after enough exertion to cause a PEM crash?

  • Exertion does not cause my normal sleep pattern to change (select even if "normal" sleep is bad)

    Votes: 0 0.0%

  • I fall asleep earlier

    Votes: 4 8.5%

  • I wake up later

    Votes: 5 10.6%

  • My total sleep time is increased

    Votes: 7 14.9%

  • I fall asleep later

    Votes: 26 55.3%

  • I wake up earlier

    Votes: 11 23.4%

  • My total sleep time is decreased

    Votes: 28 59.6%

  • I cannot sleep at all

    Votes: 9 19.1%

  • Change in temperature regulation (e.g. night sweats, feeling hot, feeling cold)

    Votes: 22 46.8%

  • Increased "wired but tired" feeling before bed (resembles the effect of a stimulant like caffeine)

    Votes: 37 78.7%

  • Shaking/convulsions while asleep

    Votes: 6 12.8%

  • Increased restless leg syndrome

    Votes: 12 25.5%

  • Change in dreams (e.g. more/less vivid)

    Votes: 9 19.1%

  • Takes longer to shift out of "groggy" to more alert after waking

    Votes: 15 31.9%

  • Other changes in sleep

    Votes: 9 19.1%
  • Total voters
    47
hotblack said:
Oh that’s interesting @Yann04 the whole MCAS thing is something I’ve been interested in learning more about.

Thanks @forestglip that’s really useful to help understand what information you’re trying to get at.
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I think the name MCAS is kind of like “ME” it assumes a mechanism where there is too little proof.

However there does seem to be a constellation of allergic like symptoms in some people with post infectious syndromes which makes MCAS a maybe usefulish label, I don’t know.
 
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Kitty said:
Good questions! Maybe add:

• I cannot sleep at all

Usually true for me after a significant exertion.
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this one is very important to add.

there might be various reasons for it, but not sleeping during the night of PEM (so causing sleep reversal or messed up sleep for quite a long time, as well as exhaustion) needs to be on there if the other options are
 
I wonder how many pwME experience the "tired but wired" phenomenon? Again, one of these things I've not really experienced.

I don't think we've really discussed the history of "MCAS" as a concept, which was largely introduced by Afrin in his book "Never Bet Against Occam". He didn't invent it - there were an isolated few papers coming out of Germany about a "monoclonal mast cell activation syndrome" that IIRC involved a few patients who had been investigated for mastocytosis but where bone marrow infiltrates were not sufficiently dense to make that diagnosis. Afrin borrowed the term, reconceptualising & popularising it, & applied it to broad swathes of very heterogeneous patients. I skim-read his book years ago and it was deeply flawed, something very much evident from the early chapters. Some of his ideas were really quite strange. Maybe we should make a thread for the book sometime; I don't think I've ever seen any published criticism of it before.
 
Trish said:
It's not just about not being able to sleep it's mental and physical restlessness a bit like having too much caffeine.
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I'd love to know what the heck causes that, comes without fail for me.
Yann04 said:
Also I would be very confused on how to answer this. In the initial stages of PEM I’m all wired ...

so I get way less sleep than usual, while in late stages of PEM I have hypersomnia and sleep most of the day and night. If PEM is the entire crash period, then my sleep looks wildly different in different parts.
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yes this is exactly my experience too.
 
An option for "I sleep better" would be nice. I use physical exertion as sleep aid. Whenever I had difficulty falling asleep, I get up and do 2x8 pushups. That seems to be the right amount to make me sleep better without triggering PEM. When in PEM, my Fitbit reports 7-9 hours of sleep. Otherwise, 6 hours.
 
poetinsf said:
An option for "I sleep better" would be nice. I use physical exertion as sleep aid. Whenever I had difficulty falling asleep, I get up and do 2x8 pushups. That seems to be the right amount to make me sleep better without triggering PEM. When in PEM, my Fitbit reports 7-9 hours of sleep. Otherwise, 6 hours.
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Would the options for "fall asleep earlier", "wake up later" or "sleep longer" not suffice?
 
Okay, the poll is up! I couldn't include all the suggested options because there's a limit for polls.

Please read these details before answering:

Only answer if you experience PEM. Consider what would happen if you were to do enough physical or cognitive exertion to trigger PEM or worsen ongoing PEM. How would your sleep that same night compare to the previous night(s). Choose options which follow such exertion at least half the time.

If you select "I cannot sleep at all":
  • Also select "My total sleep time is decreased"
  • Do not select "I fall asleep later"

If exertion causes a change which is not listed, select the "Other changes" option. If exertion does not change sleep compared to days without exertion, select the "Exertion does not cause my normal ..." option.
 
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I am not sure if there is a simple answer for me.

A slight increase in activity may result in falling asleep a lot earlier, but then waking up after a couple of hours unable to get back to sleep, but more marked exertion has the ‘tired but wired’ effect making it harder to get to sleep and if I do get to sleep it is disturbed with frequent waking.

I chose the fall asleep later and reduced total sleep time options. For me insomnia and disturbed sleep patterns are easy to trigger, but hypersomnia only occurs when I am experiencing a significant relapse in my underlying ME perhaps once a decade, which is distinct from PEM that usually lasts just days or weeks.
 
Peter Trewhitt said:
A slight increase in activity may result in falling asleep a lot earlier, but then waking up after a couple of hours unable to get back to sleep, but more marked exertion has the ‘tired but wired’ effect making it harder to get to sleep and if I do get to sleep it is disturbed with frequent waking.
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I'd say the way you answered is good. The effect of more intense exertion probably highlights the effects of PEM more clearly.
 
I also included Other because part of PEM for me is waking up a lot more times during the night.

- On a good night I wake up about 4 times. (that I remember -- obviously there could be times I wake up that I don't remember!)

- On a bad night it's 13 - 14 times a night. (a rough estimate, I don't keep an actual count when it happens)

More details here: https://www.s4me.info/threads/new-sleep-poll.16742/#post-287046

Since my PEM is delayed the first night after PEM starts is often not as bad as the second or third night.

Also, the first night after exertion is probably not the first night with PEM. My PEM usually starts between 24-36 hours after exertion.

But it's all kind of fuzzy and depends on a lot of different variables!
 
ahimsa said:
also included Other because part of PEM for me is waking up a lot more times during the night.
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I have this too and it’s striking to me, because when I was mild I legitimately never woke up during sleep (I mean I was 18-19 so that’s what you would expect I guess). Now that I’m severe I cannot sleep two hours without waking up for 15+ minutes. I haven’t in months. It’s a drastic change.
 
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