[POLL] How often do you experience Post-Exertional Malaise?

[Wishful]

Sometimes the PEM observably does depend on exertion level & sometimes it seems irrationally out of proportion.

For me it depended on how used to that activity the specific muscles were. 40 km bike ride: no PEM. Climb up a few rungs of a ladder: PEM. Wash a window < 1 minute: PEM. Dig 20 wheelbarrows of soil: no PEM. My theory is that it's the muscle cell damage triggering immune activation.

 

[Mary]

@jasperfw - I get PEM, or "crash", every time I exceed my energy envelope, which is about 4 hours of light activity a day, with rest thrown in. I can crash twice or even 3 times a week if I overdo. I try really hard to stay within my safe activity window, but can't always tell where it is. Someone says they go by their heart rate but I don't think my heart rate ever gets very high.

I do recover generally within a day, due to branched chain amino acids which I take daily ( 4000 - 6000 mg a day). It used to take 2 - 3 days to recover. If I'm really lucky I won't crash during a week, but that doesn't happen very often.

I'm considered moderate.

 

[southwestforests]

My theory is that it's the muscle cell damage triggering immune activation.

Ya know, could be, could well be.

Have to wonder what is it about brain activity, such as building models which have lots of small parts, or even working out the month's finances, that triggers that immune activation.

Really, body? Really? THINKING sets off PEM? Seriously?

 

[Dysfunkion]

Ya know, could be, could well be.

Have to wonder what is it about brain activity, such as building models which have lots of small parts, or even working out the month's finances, that triggers that immune activation.

Really, body? Really? THINKING sets off PEM? Seriously?

That is what I'm trying to figure out because mental exertion PEM is the worst with me, Could thinking be actually causing micro tears in something? I find that a little hard to believe unless it involves a lot of physical strain but for me it doesn't.

Lets say for example I want to read which in short time induces PEM like no other. I enjoy reading but my body can barely function after a certain point of doing so. First I will be totally normal, I'll be able to fly through the text and comprehend it. Shortly after something starts to go wrong, my brain will stop writing it to memory properly and I need to reread things a lot. If I keep pushing my head actually does start to feel strained behind the eyes/forehead/around the back and I feel very heavy as if I had just gained 20 pounds out of nowhere and someone turned gravity up. I'll get very irritable, sensitive, and my brain feels like there's a block in connecting to itself and pulling out the most mundane information becomes harder. Socializing? Forget it I can barely use my voice. Following directions and processes becomes much slower and more difficult. It'll also get harder to breathe and I usually get some increased amount of nasal drip. My digestive system will also get more bloated and I'll get weird cravings for food I can't satisfy (something really salty, sweet, and somewhat savory at the same time, I feel like I'm starving but it's fake).

Depending on how bad the crash got it can last anywhere from 1-3 days before I start to feel more normal again and get delusions that I actually can do more but I'm just lazy....and then it repeats. lol

 

[southwestforests]

If I keep pushing my head actually does start to feel strained behind the eyes/forehead/around the back and ...

There does come a point where focusing, concentrating, on something is almost, or maybe it goes beyond 'almost', physically painful in the brain.

EDIT: had an idea to take an illustrative photograph.
Used to play board games and miniatures games, both historical and science-fiction, where some rules sets could look like that -- of course all the rules weren't used all the time, there were specific case rules for various options and aspects.

Not any more.

Can't focus enough for long enough. And then there is the PEM from doing so.

Really miss the individual friendships and group get togethers of doing so, especially the miniatures games groups. We had a ball just generally chatting and sharing drinks and snacks while playing the games.

And sometimes some really interesting or absolutely hilarious situations would arise within the game.

And then there were the various people's pets who just had to come see what was going on will all these different people in the house.

And then there were the annual conventions with lots of people and lots of different games.

But when your body just flat will not do that any more, what else can you do except stop doing that.


So, I gave away and/or sold off almost all my sci-fi and historical games and miniatures.
Kept this one which has both board game and miniatures game formats, and one other sci-miniatures game. Also kept my dice collection.

Also kept the certificates and physical prizes won in game competitions. Before ME/CFS with its brain fog and PEM hit, there were a few board games and miniatures games where I'd gotten good enough to actually decide whether I wanted to win 1st, 2nd, 3rd, place depending on which prize I liked best. Favorite prize of the ones won is a couple miniature spaceships which look like Orca.

I really miss this part of life, and yet know I did the right thing and am okay with my choice, my decision, to stop and to leave this part of my life behind since I actually literally can't do this any more, because of the inability to concentrate that much & because of the "PEM bill" for trying to do both the going places and that concentrating.

And that loss hurts.

But, hey, how much PEM has it caused to simply not happen since 2007?

A

 

[Dysfunkion]

There does come a point where focusing, concentrating, on something is almost, or maybe it goes beyond 'almost', physically painful in the brain.

It is a type of physical pain but it can't be actually in the brain becauseI don't think the inside of brain can actually feel physical pain. The pain feels like it's just under the surface but not skin level. I'll also get randomly achy in various parts of my spine that'll come and go.

 

[southwestforests]

While we're talking PEM, just saw this which Tom posted 10 minutes ago, which admittedly might or might not count as a tangent from the specific question and conversation here;

"Mental exertion", eh ... wasn't someone here just telling about that?

Contrary to popular belief, the hallmark symptom of #MECFS is not fatigue, but rather post exertional malaise. PEM, or a crash, can occur at any time , after any sort of physical, emotional, or mental exertion. Many people with #MECFS describe PEM as their most limiting symptom. This is the fifth video in a ten part video series by #NotJustFatigue

https://myalgicencephalomyelitiscfstom.tumblr.com%2Fpost%2F757001009781456896

 

[maddietod]

This is a really interesting and useful discussion. For me, fatigue and PEM are 2 sides of a coin. I wake up in the morning and check in to see how much energy I have overall. Another way of saying this is how fatigued am I already?

Will I spend the day on the couch reading + feeding myself? Can I safely manage a walk to the library? Can I handle grocery shopping?

The answers to all of these questions depend on whether the activity would trigger PEM, and how much, and is it worth it? So I guess I do get PEM. It's just part of my everyday calculus of what to do.

How is this different from people who know to train alternate days so their muscles can recover? Or a hiker who knows which trails are appropriate, but sometimes pushes further?

 

[Wishful]

Could thinking be actually causing micro tears in something?

Seems unlikely. The important part of the muscle microtears theory is the immune activation. I'm not sure there was much difference between symptoms from physical exertion or getting a cold. Immune activation in the body would also activate glial cells. So, maybe cognitive exertion triggers the same effects in glial cells. Just what sort of effects is beyond my knowledge.

 

[SnappingTurtle]

Is it possible that the position you are in while doing mental work, like reading, matters ... that perhaps a comorbidity of POTS or another form of dysautonomia causes more exertion? I only recently learned I have hyperadrenergic POTS, which explains why I cannot tolerate sitting up in a chair doing desk work for more than a few minutes. If I had been standing or sitting up a lot during the day, it would certainly trigger PEM for me.