PEM for those who are, or were, mild sufferers, how would you describe it?

I can't figure out why I experienced PEM 3 days ago. It caught me by surprise. It wasn't delayed and came on within 2 hours after my walk. Wow. Not as severe with the usual autonomic distress, but I still wasn't able to stand or walk too much for the last 2.5 days. My body felt like I did resistance exercise or a workout on a rowing machine for an hour.

I've been able to avoid PEM for almost 5-6 years. I went for my usual 50-60 minute walk and did some light weights for 5-8 minutes after, my usual routine, never any repercussions from that.

Damn it, I don't know what to make of this. My immune system might be dealing with high levels of pollen and allergy related stuff that is causing this.
 
Mij said:
I can't figure out why I experienced PEM 3 days ago. It caught me by surprise. It wasn't delayed and came on within 2 hours after my walk. Wow. Not as severe with the usual autonomic distress, but I still wasn't able to stand or walk too much for the last 2.5 days. My body felt like I did resistance exercise or a workout on a rowing machine for an hour.

I've been able to avoid PEM for almost 5-6 years. I went for my usual 50-60 minute walk and did some light weights for 5-8 minutes after, my usual routine, never any repercussions from that.

Damn it, I don't know what to make of this. My immune system might be dealing with high levels of pollen and allergy related stuff that is causing this.
Click to expand...

Pollen and grass allergy symptoms often feel very similar to PEM to me, it's very difficult for me to distinguish between the two.
 
@Tia

I don't have allergy symptoms, but the beginning of Spring is always the worst for me so it must be related to that.

I didn't experience any cognitive exhaustion, only physical.

I must have gotten deconditioned in the last week :laugh:
 
I sometimes say it's like having the flu (without the runny nose type symptoms) plus being jetlagged, hungover, and not slept for three days. PEM is when I still feel awful when resting and can't just quickly rest it away, and I feel like I've got a migraine aura (plus a headache) but not necessarily an actual migraine. I do get migraines and forget about that because I use pacing to avoid them but want to start describing it using that a bit more because more people actually understand that, although it is only one part of it.

When I got a heart rate watch that buzzed when it went over a set threshold I noticed that when I was in PEM my heart rate shot up much more quickly over nothing and my resting heart rate was much higher. I do have POTS or similar.

I say 'fatigue' a lot (well not a lot because who wants to know, but when I get the chance to say anything) and I wish I had a better automatic reaction, but it's so hard to be on the ball all the Time and to constantly be convincing people.

I also want to talk about coping strategies differently. I want to start saying 'I won't do that thing because it goes against what the hospital has advised me so that i don't deteriorate quickly' and stuff like that. I spend far too much time going 'sorry I can't really do that because I'm exhausted and if I do I'll feel like crap and I want to be able to function later'.
 
Mij said:
I can't figure out why I experienced PEM 3 days ago. It caught me by surprise. It wasn't delayed and came on within 2 hours after my walk. Wow. Not as severe with the usual autonomic distress, but I still wasn't able to stand or walk too much for the last 2.5 days. My body felt like I did resistance exercise or a workout on a rowing machine for an hour.
Click to expand...

Mystery solved. Something was brewing, it took a few days to develop. I'm in full viral mode now. I knew it wasn't from the walking I did Sunday evening.
 
The "PEM" episode I described above was alleviated by rest (2 days). This is not the same as delayed PEM I experience from going over my energy limit and being in distress. Similar pathways perhaps, but not the same.
 
I think I experience PEM occasionally when overdoing or when getting sick with a bug. I resist the IOM diagnosis of ME because I don't feel severe fatigue at least half the time. Have no OI either. Maybe there is in me an overlap of FM/ME.

But anyway, I had been coping with recent anxiety by "doing" things. Functional restriction and pandemic restrictions (to be safe from contracting omicron) are depressing during the surge of omicron cases. My function varies from day to day a lot. Gives me whiplash.

And the muscle relaxant I use for pain gives me an energy boost and made "doing" possible for a time.
Of course, the more I do, the more "normal" I think I am, and vicious circle and so forth. I realize I battle with myself about whether I'm normal or ill; I don't want to see myself as impaired, ill.

It caught up with me yesterday. Woke with dizziness that lasted much of the day.
Woke this morning brain dead and weak. Ordered groceries delivered.

I am grateful that I am able to leave the house several times a week for an hour, see nature.
 
Andy said:
So one challenge that I believe we face is that if most, if not all, research studies insist on PEM as part of the inclusion criteria, we run the risk of mild sufferers not recognising PEM for what it is.

For example, CCC description of PEM


and ICC description of PENE


I would not have recognised these descriptions as describing why I would need to take occasional days off from work to recover from what, at the time, I best described as a heavy 24-hour cold.

Now not all studies will want to recruit mild patients, so it won't be an issue all the time, but for those studies that do it could be useful to look at alternative ways to describe PEM.

So, as the title says, if you are, or have been, mild, how would you describe your episodes of PEM?
Click to expand...

When I have been mild I was able to work 6 hours a day, 4 days a week and go ice skating on my day off. If on holiday I could feel symptom free. Every day after work I would get PEM, it would kick in suddenly after feeling normal all day. I could no long process verbal interactions, my legs seized up, I would feel dizzy and sick, start getting out of breath, when I got to bed I would ache and feel sucked down, be unable to move or talk sometimes. This would pass after a few hours. If I really over did it I would crash for several days and decline for a few weeks. So even ‘mild’ I would say the definitions are spot on.

I used to have chronic fatigue for years, especially working shifts. It was caused by stress and overdoing it, though I was physically struggling with shift work more than others for some reason. I felt terrible all the time, but I could still work full time hours and exercise with no abnormal after effects, though eventually I had to go 4 days a week. I was sick a lot and had to rest a day at the weekend. Anything extra like a night out would require taking a days holiday. A straw that broke the camel’s event happened and I collapsed, which was the start of M.E. I was never the same after that. I am not tired all the time, feel normal a lot of the time, but can no longer do normal every day things without rationing my energy or collapsing.
 
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