Does your PEM often kick in immediately after sleeping?

[Cinnamon]

I wake up the next morning with PEM, too. I've always assumed this simply means it happens to start sometime during the night, which means my delay is somewhere between 10-16 hours.

 

[V.R.T.]

I often wake up in PEM and know it's going to be a bad day. But it's also quite common for me to get PEM coming on in the evenings or late at night.

The weird thing thats somewhat relevant to this question is I sometimes fall asleep and half wake up an hour or two later whilst crashing, or just jolt awake feeling really bad.

 

[MeSci]

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.

I used to have the short-lived type that you describe - wearing off within a couple of hours. In fact, it used to only last a few minutes, as I have a notice on my cabinet that says so (I really should change it, as it's for guests - not that I have many now...).

 

[AliceLily]

I woke up feeling awful every morning in my very severe years and into some of my severe years. I had the poisoned feeling for two years straight with the nausea, very severe insomnia and many other symptoms. Then the poisoned feeling began to taper off over many years. I had nausea for most of my severest years.

As time went on and into my middle severe years I remember the delayed PEM (worst PEM) would mostly start after lunch and into the afternoon and would go on for days. I was able to start recognizing this at about this point in the timeline.

In the severest years though everything is all over the places. Too much going on at once.

Something I don't get now at moderate is the night sweat. It was a regular in my sickest years. It was like water coming out in the middle of my chest where I think the thymus is. I would be wet through and sheet would be very wet at that spot.

 

[arewenearlythereyet]

I feel awful every morning ..takes on average 40-120 minutes for nausea, swimming head and body pain to subside upon waking. Only after this do I assess whether there is something else going on. Sometimes I wake up with PEM, other times it can hit me any time of the day denoted mostly by a massive increase in muscle weakness , brain fog (loss of concentration especially), nausea and sound sensitivity. Like others I know I’m likely to have a bad wake up because I am so wired and can’t sleep. Generally I have 24-48hr delay for discrete triggers, but for cumulative overload over days (like a cold, high pollen or change in temperature) it’s much more difficult to pinpoint. Obviously have symptom flare warning signs throughout the day (mostly cognitive exertion).

I haven’t seen a correlation with sleep and PEM at all for me so put “sometimes’

 

[SugarSquared]

Oh also, I used to get up immediately after my alarm and get right to having breakfast. It’s a habit I’ve had for many years and I was quite proud of it. It started feeling awful. Just tons of orthostatic intolerance while having breakfast. I’ve delayed having my breakfast until about an hour after waking up. I look at my phone in bed for an hour. I can feel good until I get up and eat, then the symptoms hit.

I’d like to think that I’m better now than I was then and I wouldn’t feel it much anymore if I had breakfast right after waking up. I had so much orthostatic intolerance. I was leaving the house so much. It always sucks to be so restricted (housebound, resting a ton, not in school, no longer the busy person I was), but it’s always worth it when I think about how sick I felt every day. I don’t want to go back.

 

[Alinda]

I tend to have 1 day extra, so after 2 nights of sleep does my PEM tend to start. With really bad overactivity, it has happened that it takes 3 nights before PEM really starts.

However there are some other patterns as well, if I only slightly overdid things, I tend to wake up bad which goes away after a few hours. I tend to instantly do a bit too much again, and get into a pattern of just not getting out of this slight PEM.

 

[Mij]

To give a recent example, yesterday morning and throughout the afternoon I felt all over muscle weakness/fatigue, felt a little better around 6pm and decided to go for a 10 minute walk to stretch out because I was lying down all day. My walk started out really bad, I didn't feel good, but as I got going a little I started feeling better and ended up walking fast for one hour. Got home took a shower AND washed my hair lifting my arms which I would never do ever after exercise. I still felt good . . . until around 10pm, and that PEM chest/arm weakness feeling started, I almost cried because I thought I might get delayed PEM this morning, and nothing. I feel good this morning. Go figure. It's just so damn bizarre.

This is why I don't think anything unusual or dysfunctional occurs during sleep in my case.


I will so interesting when they figure this all out.

 

[bobbler]

I nearly initially said yes because it is always eg 24hrs later so there is a sleep in between.

But these days as I'm so ill and have to eg do medical appointments that are 'big things for that severity' I can time the PEM hitting (as I define that - that's the other big question of course, as it is a cycle) at 36hrs. And it starts with things like leg pain and needing to wee lots. ANd may begin in the afternoon or early evening, or time when I'm wanting to go to sleep but leads normally to a night of no sleep.

I might be exhausted in the fatiguability sense from the appointment when I get home and still so the morning after but to me the PEM specific bit hits with the exact same timing and those symptoms as when I've got PEM just from a smaller cause which is a home-based appointment sitting with my legs down

It is the second night's sleep that gets PEM so bad it doesn't happen until that stage of PEM is over.

But I agree that there is the potential that the first night's sleep theoretically - when compared to what a control of a well person after that same exertion of going to an appointment might have as 'recovery' going on during that night's sleep - could be when our system isn't completing the same whatever it is that mean well people get up feeling OK the next day and I'm about to embark on a cycle of grimness.

 

[Andy]

PEM impacts on my quality of sleep and length of time asleep but I don't believe that it is triggered by sleep or awakening from sleep.

 

[Eleanor]

PEM impacts on my quality of sleep and length of time asleep but I don't believe that it is triggered by sleep or awakening from sleep.

I voted 'often', but I don't think PEM is triggered by sleep or awakening, because I generally have a bad night's sleep before the malaise. i.e. whatever goes wrong is already beginning to go wrong before I sleep.

Or rather, I see the first bad night's sleep as the precursor to the malaise, but for you the bad sleep is part of the malaise? Illustrates the difficulty of pinning the phenomena down.

 

[Andy]

Yes, and I voted 'never ' as the question seems, to me at least, to be about causation.

The bad sleep occurs in the same time period that I consider myself to be in PEM, I wouldn't like to say whether that means it is part of PEM or not.