PEM discussion thread - post-exertional malaise

[Jonathan Edwards]

I just think this sort of stuff tells us nothing useful because people invoke causation very unreliably.

And it is worth remembering that chairpersons of disease charities very often appear not to have the disease they claim to have. That applies very widely.

 

[rapidboson]

Sometimes I get PEM (or what I believe to also be PEM) where I am more tired/fatigued/weak than normally, have some muscle/bone/joint aches and a super sore throat. I don't feel horrible though and I am keen on going out for a walk or doing something. Out of carefulness, I end up doing nothing all day - but I am wonder if anybody here has those days as well and whether you also just sit them out or get up to something?

 

[Utsikt]

Sometimes I get PEM (or what I believe to also be PEM) where I am more tired/fatigued/weak than normally, have some muscle/bone/joint aches and a super sore throat. I don't feel horrible though and I am keen on going out for a walk or doing something. Out of carefulness, I end up doing nothing all day - but I am wonder if anybody here has those days as well and whether you also just sit them out or get up to something?

I get those as well. I rest, because not resting has never turned out well for me

 

[rapidboson]

So frustrating

 

[Kitty]

Sometimes I get PEM (or what I believe to also be PEM) where I am more tired/fatigued/weak than normally, have some muscle/bone/joint aches and a super sore throat. I don't feel horrible though

I'd call that moderate PEM.

For me, a certain level of PEM falls into the category of acceptable consequences of doing things I enjoy. These have been calibrated by trial and error so they don't usually trigger severe PEM.

I have mild PEM (symptoms at a rather lower level than you're describing) quite a lot, and I always rest through it. Once it's fully passed I can choose something else from my list of enjoyable-but-restrained activities without risking an accumulation of PEM.

It doesn't always work, of course. I can feel as if I have the capacity to do something and be confident I'm rested enough, yet I get worse PEM than usual.

For me, pacing means avoiding PEM accumulation whenever possible. I'm moderately ill, though, not severe, and I also use a powerchair. Walking even short distances burns through my capacity incredibly quickly, so limiting how much of it I do frees up capacity that I can use for other things.