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My perception of PEM - is this unusual?

rosie26

Senior Member
Messages
2,446
Location
NZ
My functional level is around 20% (i.e. moderate CFS) - I work some few hours a week from home, but am never symptom-free. Every physical activity (food shopping) exacerbates symptoms, as does socializing and emotional stress, but physical activity is definitely worst. I guess my cognitive score would be above 50, while my physical score would be way below 20.
@HipsHops Your physical functioning level at 20% would be in the severe bracket to me.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
What do you mean by "resting up extremely"? I'm trying the same, e.g. I do nothing but rest the two days before I'm going on holiday. What is your experience in terms of days/weeks?
It means that I am lying down and being mostly still and only get up to get something to eat briefly or to toilet. I rest like this until I feel symptoms easing up and it varies how long that takes. Depends on how sick I am.

I don't go away now. It takes too much out of me.
 
Messages
5
I would say cognitively I have (nearly) always been better than I am physically.
Same here.

The other thing is, if I'm physically worse - as in experiencing some form of PEM - then cognitively I'm gonna be proportionately worse. Problem is, as I'm always feeling so intensely physically bad during those moments of course my focus is, and has been, on that.
I can really relate to this. And, as you're saying:

With the physical impairment it is such that I can't play to my strengths so easily... There is no exchange for lack of energy (except perhaps occasionally dangerously running on adrenaline). I can't get rid of the pain. I can't exchange the insomnia for anything else or hide the impact it has on me. I can't make my GI tract or ANS function etc etc. It is far less easy to hide or to compensate for. So I think for me this is why I've tended to leave the cognitive aspects unacknowledged.
I guess it's the same for me. On those days where I feel like I'm having a bad flu I feel I can't work (or do anything else apart from lying on the couch) because of the physical symptoms. The truth is, even if I ignored those awful flu-like symptoms, I probably wouldn't be able to concentrate. I can compensate quite a lot though, but my concentration is definitely worse when I'm in a crash.

I think you'd find the test is far more sensitive than our own recognition of PEM in our body. I've read several accounts where people felt they did as well on the second day test as the first and were shocked to see that the results had fallen so significantly. Taking you to VO2 Max is enough to trigger PEM even if the test is not long.
THANK YOU so much. This means a lot to me :)
 
Messages
21
I get this thing described as exercised induced asthma, I can not run or do any high cardio, 2 minutes in and I'm fighting for air, my body turns bright red and it takes me hours to recover, the next couple days afterwards I can't function. Household chores get ignored cause all I can do is lie down or sit, getting up to use the restroom physically exhausts me.


Does this sound like PEM, I've had it since I was a child bit it's gotten increasingly worse walking to fast causes immediate breathlessness and pounding heart (even though my pulse rate is normal it doesn't even match up with my pounding heart feeling)


I have many other weird symptoms, but I've noticed Pilates exercise puts me out for two - three days and all I do 5 minutes that's my Max before creating an asthmatic reaction.



And running causes severe muscle fatigue, vomiting, closed air way, upper chest pain, but no one knows why it's close to an allergic reaction .... got me out of running the mile in highschool. Most of my symptoms got severely worse after experiencing strep throat 6 times in a three month period when I was sixteen turns out I had mono, I've steadily gone down hill since then
 
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