Does your PEM often kick in immediately after sleeping?

[Verity]

PEM is usually described by its 24-48 hour delay, but one thing I’ve noticed is it’s very likely to start for me when I wake up, regardless of whether it’s actually been 24 hours since the triggering event. To me this suggests something is happening during sleep specifically. I’m curious if others see the same pattern.

 

[Hoopoe]

For me it is mainly triggered during sleep.

 

[OrganicChilli]

Yes. I can go to bed feeling completely fine, but the next morning I will wake up with PEM. I can always tell as soon as I wake up that something's wrong.

 

[Kitty]

For relatively mild PEM: always. So much so that it appears it's caused by sleeping, however unlikely that is.

For more severe PEM: sleep is impossible for the first one or two nights, so the delay is longer. Lack of sleep doesn't have the effect it might on a healthy person, because my brain's still full of whatever the 'wired' part of wired-but-tired is.

 

[NelliePledge]

PEM affects my sleep it can stop me sleeping altogether or push my delayed sleep onset to 6 or 7 am. I always have worse symptoms when I wake up even on my best days. Pain lower concentration and energy higher at the end of my day than the start.

Just seen what Kitty wrote - similar to me.

I didn’t vote as my situation not captured by the poll q&a

 

[InitialConditions]

Yes. I can go to bed feeling completely fine, but the next morning I will wake up with PEM. I can always tell as soon as I wake up that something's wrong.

I voted 'often', but this is my general experience too. Groggy/poisoned feeling and sore throat on waking are good indicators of PEM. (Edit: And worse OI when getting up.)

 

[Lou B Lou]

The sleeping period is part of the delay period

 

[MeSci]

I feel bad every morning first thing, then a bit better, then bad again after having breakfast. As a result, if I have to go shopping or have other exertion or concentration planned, I go without breakfast.

I nearly always feel gradually better in the afternoon, usually considerably better by about 1500. I think it takes longer when I have PEM, and sometimes I will feel bad all day as a result of PEM.

I'm not sure whether PEM is relevant to what time I feel worst. PEM tends to come on a day after exertion. In other words, I feel reasonable the day after exertion, then PEM kicks in and lasts for 2 to 3 days.

I didn't vote because it's more complicated.

 

[SugarSquared]

PEM is usually described by its 24-48 hour delay, but one thing I’ve noticed is it’s very likely to start for me when I wake up, regardless of whether it’s actually been 24 hours since the triggering event. To me this suggests something is happening during sleep specifically. I’m curious if others see the same pattern.

Yes 1000%. The regular “24-48 hour delay” feels inaccurate most of the time because it so much more often when waking up the next day. I put often because sometimes it’s after breakfast like @MeSci and sometimes it’s a few hours in the day, but it’s never actually 24 hours after exertion. Like, I’ve never had it happen that the triggering exertion is at 6pm and then PEM kicks in at 6pm.

I’m really interested in Jonathan Edwards saying our growth hormone peaks in sleep (full quote below). What if our GH or another hormone is off during our sleep and that leads to PEM? It would explain the symptoms appearing with a delay and their common appearance after sleep. That’s why I believe a sleep hormone test following exertion is in order. It seems only cortisol has been measured for 24h in pwME, but I would need to verify that statement. Everything looks normal when we’re awake, but what if it’s messed up when we’re asleep?

Because the hypothalmus has a prominent and complex response to exertion in terms of growth hormone releasing hormone, CRH, vasopressin and even thyrotropin releasing hormone. Most of your growth hormone output is in a peak that the hypothalamus triggers during nonREM sleep and then during the day after exertion. Repeated exertion can lead to higher and higher peaks.

These events occur over a couple of hours. The longer delay of PEM is still a mystery but if feedback mechanisms are involved and further 'auditing' signals occur in relation to sleep cycles it becomes a reasonably pathway to PEM I think.

 

[Verity]

I’m really interested in Jonathan Edwards saying our growth hormone peaks in sleep (full quote below).

I really wish I knew more about the brain so I could dig into this! @Jonathan Edwards ‘s hypothalamus idea really intrigues me because PEM is so tied to sleep, both occurring after it in a lot of people and preventing it. That seems to point directly at the hypothalamus. Unfortunately I’m just a layperson and have no idea where to go further with that observation.

 

[hotblack]

A real mixed bag for me. Sometimes not being able to sleep well is a sign it’s going to be bad. Sometimes I can sleep ok and it kicks in the next morning. Or I can wake okay and part way through the day things decline.

I’m really not sure I can say there’s a clear pattern.

 

[Mij]

Can we give examples on how you know delayed PEM starts during sleep?

Is it immediately after waking up or is there a normal timeline window delay (12hrs, 18hrs, 22 hrs et) that starts to set in? What is your delay timeline? There are different timelines for different people is my understanding.

I wake up feeling fine/normal, delayed PEM kicks in later in the morning, but for me, it's more to do with the 12-13hr time/ window delay if I overdo/overexert the evening before when I do most of my activities b/c I feel better in the evenings.

I'm assuming if I go over my energy limit at 8 am, then delayed PEM would start at night before I sleep? I don't know because I do most of my activities in the evenings after 5 pm when I'm feeling better. It doesn't have anything to do with sleep in my case. I dunno.

 

[Verity]

Is it immediately after waking up or is there a normal timeline window delay (12hrs, 18hrs, 22 hrs et) that starts to set in?

Personally it’s the fact that there isn’t a consistent number of hours for me. It seems a lot more likely to immediately follow sleep than to be a consistent 12 or 24 hours out, for example.

 

[Mij]

I had this discussion with a dear friend many years ago, he woke up every morning feeling "poisoned" every single morning and had severe insomnia for 18 years, so this might have been his interpretation of delayed PEM. Whatever occurs during sleep was a big factor in his case. It might not have to do with exertion?

I feel worse in the morning, I don't have insomnia, but staying upright is more challenging for me and gets better as the day goes on.

So there is something that does occur during sleep at different levels for different pwME.

 

[DHagen]

I seem to be an outlier here - while I almost always feel pretty shit on waking, as far as I can recall it always takes the forms of various shades of exhaustion and fatigue. I don't think I have ever had PEM hit first thing in the morning, it has always hit after I've been awake at least a few hours (sometimes quite a few, not too long ago I had an evening onset, which was an upsetting first), comes on suddenly, and catches me off-guard. I'd guess that 90% of my PEM has hit me between 13:00 and 16:00. Even when in the thick of PEM, my symptoms do not really become apparent/severe until I've been awake at least a little while - it might well be less than an hour, but it's enough to fully regain consciousness and think "oh, maybe this was a short one."

Even in the midst of a serious crash, I will have a moment of hope every day when I wake up and don't notice any nausea or vertigo or sick feelings.

Edited to add: sleep is general terrible/non-existent on the day that I over-exert. I sometimes have a roughly 24-hour delay and sometimes it takes c. 48 hours. If the latter, I have sometimes found that I seem to sleep longer than usual (which is so rare it is always notable) during the intervening night before the collapse.

 

[Creekside]

I'll point out a bias in the reporting: you aren't aware of PEM starting sometime before waking, because you're asleep. Your PEM might start sometime between falling asleep and waking, resulting in waking up feeling lousy, so there's an extra 8 hrs of so to be reported as: "it starts when I wake up".

I no longer get PEM, but I get the same set of symptoms flaring up ~48 hrs after consuming certain foods. The flare might start during the night, but it's difficult to determine these PEM-like symptoms during a brief waking and trying to fall back asleep, because I'm not trying to do things.

 

[Kitty]

I wake up feeling fine/normal, delayed PEM kicks in later in the morning, but for me, it's more to do with the 12-13hr time/ window delay if I overdo/overexert the evening before

I don't think I've experienced quite that pattern. [I've edited this sentence because I misread part of your post]. PEM may fluctuate but always starts with what feels like recovering from sleep. It happens even if sleep's been delayed.

Mild PEM may have eased a bit by lunchtime and mostly passed by late afternoon, even though it was triggered by activities the previous evening.

I wonder if the use of "24 hours" started because it sounds more sciency than "the next day"? For me mild PEM probably starts about 14 hours after exertion and may have resolved within 20; it's accurate to say it happens the day after exertion, but not accurate to say it's delayed by 24 hours.

 

[Mij]

I differentiate between PEM and delayed PEM.

Mild PEM starts whenever it starts for me. There is no timeline. Both cognitive and physical PEM passes within an hour or two after I lie down. The physical part doesn't prevent me from cooking or doing light cleaning. I can still function.

Delayed PEM is horrible. I get the body signal immediately when it starts, and the symptoms gradually worsen as the hours pass. I can not function. I have to wait for a few days to return back to baseline.

 

[DHagen]

I differentiate between PEM and delayed PEM.

Mild PEM starts whenever it starts for me. There is no timeline. Both cognitive and physical PEM passes within an hour or two after I lie down. The physical part doesn't prevent me from cooking or doing light cleaning. I can still function.

Delayed PEM is horrible. I get the body signal immediately when it starts, and the symptoms gradually worsen as the hours pass. I can not function. I have to wait for a few days to return back to baseline.

This sounds pretty close to my experience. An hour might be a bit fast, but "mild" PEM does seem to pass within an afternoon and is extremely difficult to connect to a specific activity because the time frame seems so variable. I can also manage to get by until it is gone. Delayed PEM is incapacitating and lasts days, at a minimum.

 

[Peter T]

Although I often wake in PEM it is not universally so. I also can occasionally wake feeling a bit groggy, but not full blown PEM when over hours I get worse and worse until there is no option but lie flat in a darkened room, even at times continuing to get worse over days or weeks. Also more occasionally PEM can come on later, some hours after waking.

Also, being able to fall asleep after some days and having several hours of refreshing sleep can reflect coming out of PEM. At times this can happen after marked diarrhoea associated with a severe headache culminating vomiting. Subjectively this is not dissimilar to coming out of food poisoning or a stomach bug.