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

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.

 

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.

 

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.

 

I just misread the thread title as, 'How does exertion affect sheep?'

 

That's interesting, I thought it was a common experience. Not because I've actually looked up research on it!—just because so many folk talk about it. It's very easy to pick up false impressions.

 

It makes them go "Bah".

 

I'd love to know what the heck causes that, comes without fail for me.

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.

 

Would the options for "fall asleep earlier", "wake up later" or "sleep longer" not suffice?

 

Presumably makes them feel a bit woolly?

 

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.

 

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.

 

I'd say the way you answered is good. The effect of more intense exertion probably highlights the effects of PEM more clearly.

 

Yeah, I wasn't sure how to word it, but that would be included.

 

I fall asleep very late and I am wired but tired, even more than usual.

 

I put other. After exertion or upset I get palpitations when I lay down for bed that feel like pressure.

 

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!

 

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.