How soon does PEM hit after exertion?

[keepswimming]

I'm curious about this. Personally, sometimes PEM hits the next day, but often I find it takes a few days to hit and I wondered if this is the case for anyone else.

I find this extra confusing, as I just think I've coped with something and then it hits me! A case in point was this week, I had a bad day Friday and over exerted due to something that was out of control. So I took it extra easy all weekend, and although I was emotional (which is a PEM sign for me) I thought fatigue wise I seemed to be coping quite well... Then yesterday (four days later) it hit me properly. I wondered how common this is?

 

[Hufsamor]

I have the same thing.
Usually it hits on day three (doing something Monday, PEM hits on Wednesday)
Sometimes the same day, sometimes next day.

I'm not sure this is the same thing: But several times I have even had it not hitting at all, until after a three months time.
Thing happens, I seems too coop just fine, taking time off, doing the right things, and everything seems just fine. And I think I'm better. Then the big crush hits. It seems like I've somehow avoided PEM for a long time, then it accumulates.

It's very confusing. It took me years to realise I had PEM, I seemed to collapse just out of the blue, with no reason at all.

 

[keepswimming]

@Hufsamor thanks for your reply. Understanding how your body is reacting is hard but can be helpful! I too wonder if it accumulates - sometimes I have a few weeks when I think I'm managing things OK, and then suddenly I go downhill. I never thought of this as being PEM but I wonder if it could be.

 

[xebex]

It can be different times for me, at my worst it was a very obvious 48 hours later and took weeks to recover from, it does seem that as I am Very slowly improving the crashes comes quicker and leave quicker sometime’s even leaving without inducing PEM after. I hope this new pattern means I’m improving rather than the ME has simply changed.

 

[andyguitar]

the crashes comes quicker and leave quicker sometime’s even leaving without inducing PEM after. I hope this new pattern means I’m improving rather than the ME has simply changed.

Most likley a sign of improvement @xebex

 

[xebex]

Fingers crossed! @andyguitar

 

[intoxicatedorange]

I wanted to ask this same question! Mine usually hits immediately once I've gone beyond a certain limit of exertion. almost suddenly, and starts to feel like I can't breathe and usually a headache and brain fog comes on at the same time. This didn't seem common so I was curious if it happens to anyone else.

 

[Rufous McKinney]

I wanted to ask this same question! Mine usually hits immediately once I've gone beyond a certain limit of exertion. almost suddenly, and starts to feel like I can't breathe and usually a headache and brain fog comes on at the same time. This didn't seem common so I was curious if it happens to anyone else.

I checked: immediately and the next day.

Immediately- happens when you just abruptly runout of: something. (blank brain, blank muscle..and I start feeling pretty awful...within moments...)

The ears start ringing...and this cellophane feeling in my brain..starts to build and I am shaking my head as if trying to toss off- something...and Boom it starts.

But mostly- PEM associated with going out and doing something (the appointment, the grocery, the dentist, acupuncture)...schedule 72 hours of bed rest and do nothing at all...and its mostly coming on the next morning.

I can pretty consistently feel a bit better on Day 4 after some small event.

****

We talk about PEM as an event...a crash...to endure and come out of...but what do we call this...cycle I experience which is 24/7? Every day, most of the time..there is a mid-day window where I can tolerate how I feel. Then its 3 pm and some slide downhill starts every single day.

 

[Rufous McKinney]

We talk about PEM as an event...a crash...to endure and come out of...but what do we call this...cycle I experience which is 24/7? Every day, most of the time..there is a mid-day window where I can tolerate how I feel. Then its 3 pm and some slide downhill starts every single day.

For me, the scary crash is what happens when I have to DO THE THING during existing PEM.


already crashed...then having to- get on the airplane. Or my forced GETS experiment where i did the thing three days in a row....lead to a 60 day collapse. Not 72 hours.

 

[xebex]

Crash on Top of a crash YUK! My scary crashes can happen when I feel completely normal. One minute I’m cooking dinner the next I feel like I’m slipping into a coma! Then I’ll wake up the next day with PEM.
As per the 24:7 thing, I think this is kind another part of ME, possibly seperate to the crashes and is due to detox plus (and hear me out in this) “normal” hormonal fluctuations. So ME bodies can’t detox properly and as the day goes on Just the stress of standing or any activity really, causes toxins from the muscles to build up. That mid afternoon slump is a normal change in cortisol, it’s why doc says this is normal and just don’t get it, but with our ME bodies our brains are reading this normal change as abnormal it’s saying hey cortisol is dropping lie the fuck down emergency going on! Then as the toxins start to subside the brain can kind of wake up and go oh ok, it wasn’t an emergency and start to pull you out of it. This cycle can be hours to months long. Just my observation over the last year as I’ve been improving.

 

[Rufous McKinney]

As per the 24:7 thing, I think this is kind another part of ME, possibly seperate to the crashes and is due to detox plus (and hear me out in this) “normal” hormonal fluctuations. So ME bodies can’t detox properly and as the day goes on Just the stress of standing or any activity really, causes toxins from the muscles to build up.

Yes...generally agree... Its what it is every day, plus what it is during the Bad Paybacks....its an endless cycle of....issues and feelings and chemisty.

I call it, for literary reasons- Tits Up in a Ditch. (when your cow, is found over there....in the ditch...and things arent' going well)...

***

Knowing I must get on the airplane and return to the country i live in....after a 3 month visit to my daughter...I am hording energy the last few days before...the 5 am day to return. I must NOT go out for a Good Bye dinner (there I was at the goodbye dinner, anyway). Then all the social pressures when your leaving the next day. More pressures. Awkward thank you's. Other guests around who aren't sick, who invite you to go shopping and You have to say No, Thank You.

At 10:30 PM my daughter insists we must do facials..we bought some clay and didn't do the facial for three months. I need to go to bed...I keep insisting. (we do the facials, anyway).

Up before 5 am due to airplane schedules..

The 5 hour flight doubled over with bladder cystitis.

2 months- it took 2 months to recover from that one day.

 

[xebex]

I hear ya! I have a 6yr old, had dreams of homeschooling her. But She’s been in 9-5 care since she was 3, I missed most of her growing up. Missed her first ski session. Missed her learning to swim she has some behaviour problems as a result especially when she sees me doing a bit better, then freaks out when I’m back in bed... terrible

 

[Rufous McKinney]

I hear ya! I have a 6yr old, had dreams of homeschooling her. But She’s been in 9-5 care since she was 3, I missed most of her growing up. Missed her first ski session. Missed her learning to swim she has some behaviour problems as a result especially when she sees me doing a bit better, then freaks out when I’m back in bed... terrible

Gosh that sounds hard. Its tough enough to deal with all this- but then to also have the challenge of a young child needing to understand what is going on..

I don't know if six year olds can- get some therapy but maybe she would benefit from some form of being able to talk about it with someone... also just wondering about how children...maybe just don't realize that we all deal with-challenges...in many forms. This is your version.

Also, your reassurance that- sometimes people can feel good and then other times they need to rest and your sorry its like that...but you'll be ok...

I know I took on as a teenager, the notion that somehow I had contributed to my mother's depression which I did not understand at all, AND was never openly discussed.

Things out in the open, talked about...are less formidable..then the unspoken and projected...

 

[xebex]

Things out in the open, talked about...are less formidable..then the unspoken and projected...

Thank you. Yes we are as open as we can about it. Sometime she thinks it’s her fault it’s heart breaking but I do remind her that when I was pregnant with her I felt much better and I had 3 good years and it was awesome. That’s makes her happy. And me too!

 

[Rufous McKinney]

Sometime she thinks it’s her fault it’s heart breaking but I do remind her that when I was pregnant with her I felt much better and I had 3 good years and it was awesome. That’s makes her happy. And me too!

Just keep those lines of communication open...give her chances to express how she is feeling!

It will be ok....Hugs.

 

[xebex]

Just keep those lines of communication open...give her chances to express how she is feeling!

It will be ok....Hugs.

Thank you

 

[andyguitar]

I wanted to ask this same question! Mine usually hits immediately once I've gone beyond a certain limit of exertion. almost suddenly, and starts to feel like I can't breathe and usually a headache and brain fog comes on at the same time. This didn't seem common so I was curious if it happens to anyone else.

Among those I have met this does happen often, particularly when the illness first starts. For some it continues like this for others it is delayed. It's one of the strangest aspects of me/cfs.

 

[Wishful]

Your poll is missing an important point: what kind of exertion? My physically-induced PEM has a very consistent 24 hr delay. My cerebrally-induced PEM has a variable delay from less than an hour to several hours. To make this even more confusing, physical exertion apparently requires significant cerebral exertion, so forcing yourself to do something physical could trigger cerebrally-induced PEM (and maybe later PEM?). The two types of PEM triggers are different, since cumin blocks my physically-induced PEM, but not the cerebrally-induced PEM.

From my reading, it seems that if the delay is precise and consistent, it's likely that the immune system (maybe just t-cells) is involved. T-cells seem to have that kind of precision timing. When I had a type IV (t-cell mediated) sensitivity, the delay was 48 hrs +/- just a few minutes.

 

[keepswimming]

Your poll is missing an important point: what kind of exertion? My physically-induced PEM has a very consistent 24 hr delay. My cerebrally-induced PEM has a variable delay from less than an hour to several hours. To make this even more confusing, physical exertion apparently requires significant cerebral exertion, so forcing yourself to do something physical could trigger cerebrally-induced PEM (and maybe later PEM?). The two types of PEM triggers are different, since cumin blocks my physically-induced PEM, but not the cerebrally-induced PEM

Thanks for pointing this out @Wishful I hadn't thought about different kinds of activity triggering PEM in different ways. Another factor to puzzle over 😏

 

[RyeRyeBread]

Mine usually hits 2-4 hrs after exertion, but occasionally holds off until the next day.