Post-Exertional Malaise - a discussion including defining and measuring PEM

Should we change the name PEM to DEM since this is what sets us apart from other medical conditions? Delayed Exertional Malaise? PEM implies that malaise could be brought on immediately or delayed.

 

Howdy Mij,
There are some patients reporting PEM immediately after exertion. I usually experience minor fatigue within 30 min, sometimes followed by another wave in about 2 hours depending on the severity of exertion. The biggie that comes the next day lasts days, and that's the one that I consider true PEM. But the earlier ones could be as debilitating for some.

 

Would like to know more about this. I've called every feeling of having crashed PEM, whether due to exercise (which I've not been able to do for a year and a half) to riding in a car (even a 15 mn car ride w/someone else driving now makes me crash) to screen time. And so I've felt like I've been in PEM for about a year.
So glad you all are reporting updates, writing about them, and appreciate any other layman's bullet-point differentiation between PEM and other aspects of ME crashing/fatigue. Thank you!!

And may 2024 bring a truckload of helpful new research and developments re:ME, Long Covid, etc.

 

Hi, welcome to the forum!

Ah yes, I've read many accounts from pwME who experience what you describe, more like a 'rolling PEM'.

I experience both immediate and delayed PEM. The immediate PEM appears mostly during the Spring when allergy season is high, it feels more immunological in my case. I get deep muscle soreness and short term autonomic weakness/fatigue. I feel as though I'm going into PEM, but it's more of a PEMish experience if I only overdo a small amount. I also recover much faster from immediate PEM both cognitively and physically- within an hour or two. If that makes sense. I also get immediate PEM in December during flu season w/o having the flu.

I'm able to control delayed PEM by pacing. In general I'm able to go for 50-60 minute walks w/o delayed PEM because I have an established baseline. I'm aware of my energy limit and stay within that range.

Delayed PEM is very different from immediate PEM for me but they both most likely involve immunological stressors.

Delayed PEM usually resolves after 3 days, but for those 3 days I just want to be put out until I'm back to baseline.

 

I realized years ago that provoking delayed PEM over and over again by continuing to exercise amplifies the symptoms both cognitively and physically. We might not notice it right away, but years down the road we will and there's no turning back at that point.

 

I'm not familiar with how long each CPET takes? How many minutes? If I go over my energy limit, for example, I'm ok with walking in the evening for under one hour, but if I go over my energy limit by 10 minutes, then I will be in full blown delayed PEM for 3 days. If I go way over 10 minutes, then the delayed PEM has lasted in the past for over one week. That only happened twice b/c I no longer go over my limit.

 

I missed this.

Are you referring to delayed PEM? How long in hours is the delay?

Do you experience immediate PEM? Do you feel symptoms of PEM soon after physical or cognitive activity? Do you recover within a few hrs or does it last for days? Or do you have a rolling type PEM with symptoms coming and going?

 

This is something I found rather interesting as I progressed. When I was in severe/moderate end of the spectrum, the threshold was a bright red line triggered only by physical activity. As I moved to moderate/recovered side though, the threshold became fuzzy and floating. I'm now more likely to get PEM in the Springtime like Mij does, during the pollen season. My guess is that you are constantly sick when you are in severe/moderate end, so the additional stress from pollens doesn't make you much weaker. When you are in mild end though, the pollens could put you under the weather and prime you for PEM, so to speak, so it takes less to trigger PEM than usual. Just my guess.

 

Yes, for me the delayed PEM is the worst and brings new symptoms I haven't experienced before. The new symptoms I am talking about only occurred when I was very severe with the ME and not in severe ME that I can remember.

Those new symptoms were very frightening to me at the time because it felt like I was very close to dying. Heart symptoms, blood pressure felt like it had dropped dramatically very suddenly. One brand of paracetamol and another medication I can't remember dropped me also, weakening me like I was a 120 years old. It took hours for it to dissipate.

I'm not really game enough to try that particular brand of paracetamol again, just yet. But it would be very interesting to see how it affects me now that I am at moderate level, 20 years later.

 

Yes, the heart symptoms are the scariest and muscle power loss too. I never had pain. My frightening symptoms occurred when I was feeling almost recovered so it goes to show that delayed PEM is the underlying pathology of M.E, whether we are mild, moderate or severe.

 

What kind of heart symptoms do you have? For me, I regularly get skipped beats and brief episodes of atrial tachycardia, but when I'm really bad, those episodes last longer. Thankfully not a-fib at this point.

 

I would say that chest pressure is concerning and I'm afraid to stand up or walk across the room. It might not even be my heart? Could be lowered CBF?

I get tachycardia during viral infections so I understand how that feels, delayed PEM doesn't feel that way for me. The last few days I've been feeling 'viral', an inner viral thingy again and my heart rate was up and racing for the last 3 mornings.

 

This is very helpful. I can usually tell when I've really overstepped my exertion limit. (I get something I've heard no other pwME mention, which is a sensation centered in my left chest that feels like I'm not getting enough oxygen. Very hard to describe, but the closest thing it comes to is my experience of coming out of general anesthesia when I've been given a bit too much.) I don't know that I'm ever aware when I'm starting to get to my threshold or have barely overstepped it.

For me, both physical exertion (I just drove myself to get lab work done-- had to happen, and the lab is five blocks from our house, which 2 years ago would have been an easy walk-- and that is the first time I've left the house in at least a month) and especially being on a computer and/or writing, which is sadly part of why I'm not on this site very much.

A related question: have any of you gotten what you realized and retrospect was a very delayed diagnosis, and even though you have tried to pace better, you feel like your symptoms are getting progressively worse?

I think for me, going probably at least 30 years with this but not knowing it was something other than rheumatoid arthritis related fatigue so following exercise protocols for that, I wonder if I am in some kind of very long and extended PEM from all of those years. And I and my husband are quite concerned by my diminished capabilities.

 

For me, the chest thing is as I described above, not a pressure but a feeling like all my energy is draining out of my chest and even sitting upright is hard.

I got a bad spell of tachycardia back when I was first year at university and pushed myself too hard during the first term and my body crashed after that. Sometimes I wonder if I had both JRA and ME going on at the same time. Ever since then, though, what I've noticed is the arrhythmia and not sinus tachycardia.

I don't know enough about the viral aspect of things to have a sense of feeling viral as you describe. I do know that my JRA started out as an extremely bad virus that left me bedridden and very sick for 2 weeks, and then very easily fatigued for months after that. Doctors didn't know what was going on with me until 9 months later my ankle swelled up and they jumped on that and decided I had JRA. And I think that diagnosis was at least partially right, because I have had all the joint stuff that goes along with JRA. But I don't think that now I have that sense of having a virus, in that I associate that at least in part with feeling feverish, and I almost never feel that way.

 

That's a good description too. How do you feel when you're sitting upright for too long w/o being in PEM?

I feel chest pressure and sometimes like I have a clamp around my forehead after being upright/sitting for too long. I feel better after I lie down for a bit. I would describe this a orthostatic impairment or intolerance. It's worse during delayed PEM of course.

 

Honestly, I'm not sure I've ever been out of PEM for at least the last 5 years, maybe more like 10.

What I feel on days when I think I can sit upright without it immediately being too much is that, after a while, my chest gets tight and I also get the sensation in my chest I described above.

I have a mild migraine today, but generally head symptoms just come with screen time.