Mel9
Senior Member
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- 995
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- NSW Australia
Well, this has been very educational for me. I'd been assuming that more people have PEM like I do, which lasts a minimum of 10 days and that's with the best self-care I can manage -- basically staying in bed most of the time. But clearly my assumption was far off the mark. It makes me wonder if my daughter doesn't sometimes have PEM for 24hrs and we don't acknowledge it because we're used to thinking of PEM lasting days, weeks, or months, and feeling crappy once in a while is normal for ME.
Still, there must be more people who have long PEM recoveries because I hear a lot of fear about the CPET causing long-term PEM. I PEM pretty severely, it appears, and I've done the 1 day CPET twice without getting a months-long PEM. So where are my severe PEM cohorts?
Are a crash, a relapse, and PEM different? For me they seem to be the same thing, although I might use different words in different contexts or depending on the length of the episode.
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The other difference I'm noticing between myself and others is how long it takes the PEM to hit. Obviously, when I was in a continuous state of PEM I felt bad during and immediately after activity, but I felt awful all the time. However, even in the early days my PEM took 4 days (like clockwork) to hit. It took years to figure that out; in fact, other people figured it out before I did. But even though it takes days to hit, it is not subtle. It comes on very hard and very suddenly.
I wonder why I'm different from so many of you. Maybe the fact that my OI is not severe results in less immediate symptoms. Maybe it takes my body longer to rev up inflammation or cytokine reactions. I dunno. Another ME/CFS/SEID mystery.
I agree that continuing activity while in PEM will just extend the PEM episode. If I don't go into major rest mode during PEM, I will stay in a constant state of PEM for months, or even years. That was what I was doing for the first 5-6 years I had the illness, before I understood about either pacing or PEM.
During my worst period, I could do practically nothing -- walk across the room, carry something heavy, fix the simplest meal, make a bed -- without causing PEM. So it was impossible not to be in a constant state of PEM.
That's how I felt all the time until I finally learned that I needed to be recliner- or bed-bound nearly continuously. I hated it, but it did help me minimize the constantly exhausted state -- that and some other symptomatic treatments. It sure sounds to me like you are in a constant state of PEM.
You're right. A very low PEM threshold is extremely debilitating even if the PEM only lasts 24 hours. In my experience, with a PEM threshold that low, it's nearly impossible to avoid being in a constant state of PEM.
My PEM threshold seems much higher, too, since I've been taking high-dose CoQ10. I can still PEM myself, but it takes a lot more. I think I went 8 months before I PEMed myself the latest time.
Interesting. That doesn't work for me at all. I feel fine during the activity, so I have no way of knowing at the time that it's too much. I only know how much I overdid by how bad the crash is afterwards. Wearing a HR monitor to avoid going over my AT helps me judge my appropriate level of activity. If I keep going until I feel symptoms, I'm way, way past my PEM threshold and I'll be bedbound for weeks or months.
The same is true for me. It seems that good treatment can increase PEM threshold and lessen the duration. Now that I'm as "healthy" as I've been in over 10 years, I'm largely asymptomatic, I can go for months without PEM if I pace properly, and my PEM episodes when they do happen are the shortest they've ever been. The problem for me is that when I do develop PEM, I have to go into major rest mode to keep the length of the PEM episode under 2 weeks. For me, that means severely limiting even self-care activities and spending every spare minute in bed.
I experience severe PEM 24 hours after mild physical exertion such as shopping for an hour or walking up a hill. 24 to 48 hours bed rest is needed before I recover. Symptoms for this low level PEM are low body temperature (35.4C), aching legs, extreme weakness when walking (looking drunk) headache, and a strange nerve tingling under my forehead, legs and odd places. I made the mistake of doing 40 min on a step machine last year and had much worse PEM - extreme pain in legs so needed hot packs. That PEM lasted around a week or more