Why does some ME/CFS become very severe? Discussion thread

Creekside said:
Also the opposite in terms of why do some PWME encounter the same triggers and not get more severe. You'll have plenty of reports that people became more severe after physical exertion, yet there are others who do even more exertion, and do it fairly frequently, yet don't get more severe. Likewise for infections, vaccinations, sleep deprivation, etc.
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And on top of this, the fact that one can engage in an activity dozens of times (say, a short walk) and then one day, suddenly crash - it's quite natural to say that one was overdoing things, and that there was some kind of cumulative damage that finally pushed things over the edge, but whether that's really the way it works, we can't know. Maybe all or most of those earlier exertions felt ok because they were ok at the time, and then something else changed such that the normal routine ceased being sustainable. It's all terrifying and infuriating.
 
DHagen said:
And on top of this, the fact that one can engage in an activity dozens of times (say, a short walk) and then one day, suddenly crash - it's quite natural to say that one was overdoing things, and that there was some kind of cumulative damage that finally pushed things over the edge, but whether that's really the way it works, we can't know. Maybe all or most of those earlier exertions felt ok because they were ok at the time, and then something else changed such that the normal routine ceased being sustainable. It's all terrifying and infuriating.
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Yes. This has been a big issue for me. And not to derail the thread, but it’s a big reason I struggle with pacing advice because I find that it overlooks the phenomena that “an activity is fine until for no apparent reason it isn’t.”
 
Yann04 said:
This is very long sorry. I just wanted to lay out things as they were. Without simplifying into this caused that. Just how I experienced it.
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Trish said:
No need for apology, the details are important to help us to undestand.
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Indeed. Nothing to apologise for.

Furthermore, people have a right to tell their story, and there are very few places ME/CFS patients can do that in safety, to an understanding and sympathetic audience.
 
Clio said:
I was mild/moderate for years most likely, could be EBV in my teens but that is just speculation, a month after a covid infection in late 2023 I was prevented from sleeping for several days in a row
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My experience has been similar. I’ve had some kind of energy limiting illness pretty much as long as I can remember (dealt with abnormal fatigue as young as 11 y o I think) but I’m not sure if I’ve experienced PEM before I developed moderate CFS as an adult. I did have frequent mild colds that could’ve been PEM but it’s hard to say in retrospect. I tolerated physical activity well enough though my performance has always been substandard especially during cardio exercise. I don’t recall anything like crashes following strenuous physical activity. I think it was dysautonomia that I developed after EBV at around 11 y. o.

Then out of nowhere I developed severe insomnia in 2022. I had mild insomnia my whole life but this was different. I regularly stayed up for 48+ hours. I think it might have been covid related. I’m not sure I’ve had covid at that point but it’s impossible to rule out. In the preceding days I felt off. Like there’s been some physical change in me. I developed histamine intolerance around the same time. The insomnia lasted for a month until I found an effective medication. It was brutal. I slept for like 18 hours a week.

A few months later, even though my insomnia was under control, I became exercise intolerant, crashed and deteriorated to moderate.
 
Yann04 said:
Instantly after the surgery I got terrible stomach symptoms and became bedbound.
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Initially I had terrible stomach symptoms too. They started before ME but got much worse in this twilight zone of feeling terrible and fatigued but not meeting ME/CFS criteria yet. My reflux got so bad I had dysphagia for a month or two and I had terrible reactions to so many foods and especially to alcohol. Having just one sip of alcohol could make me extremely dizzy and lethargic. I got my reflux under control by going on a low histamine diet and it’s been much better since even though I more or less stopped eating low histamine (the symptoms flare without quercetin though)
 
As to how I became very severe I was forced to relocate to a different country and prolonged overexertion made me crash to very severe from moderate. Subsequent crashes made me worse and I became bedridden. My physical endurance sharply declined. Now even in bed it’s easy to physically overexert just by sitting up or looking for a lost earplug
 
wingate said:
it’s a big reason I struggle with pacing advice because I find that it overlooks the phenomena that “an activity is fine until for no apparent reason it isn’t.”
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Too many unknown factors. If a spice could block my PEM, there's no reason why a spice couldn't lower the threshold for PEM for someone else. Maybe for some people their threshold for physical triggering depends on what cognitive exertion had preceded it, or followed it. Is the effort of digesting a meal adding to muscle exertion? Does the threshold vary with time of day? Can a bit of microbial warfare in a single hair follicle (zit) affect PEM triggering?

For me, the magnitude or duration of physical exertion weren't significant factors, but rather it seemed to be the amount of damage to muscle cells (resulting in immune activation to clean up the damage).

The abundance of not-easily-recognized factors also applies to "why did someone become more severe".
 
Trish said:
What I have not seen is any study of why some ME/CFS becomes very severe, and why others live for decades without ever reaching very severe.
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It seems like an obvious question regarding ME. My guess is that some--perhaps many--researchers considered the question, but in their preliminary exploration, they concluded that that path of research didn't have a high probability of success. Too many unknown and unknowable factors. This thread might become the main repository of data about the question.
 
lelelemonade said:
Initially I had terrible stomach symptoms too.
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I've seen comments about gastro symptoms being at their worst in the beginning of people's illnesses before. Would it be interesting to poll this? Though I guess when we talk about it we might be combining upper gastro symptoms (like nausea and trouble getting/keeping food down) with more IBS type problems (stomach aches and symptoms that have you rushing to the bathroom etc.).
 
ScoutB said:
I've seen comments about gastro symptoms being at their worst in the beginning of people's illnesses before. Would it be interesting to poll this? Though I guess when we talk about it we might be combining upper gastro symptoms (like nausea and trouble getting/keeping food down) with more IBS type problems (stomach aches and symptoms that have you rushing to the bathroom etc.).
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For me it was definitely both.

Before the illness I had a bit of a history of IBS style symptoms. But at the beginning of my illness (or where I draw the line, its pretty arbitrary), my “IBS” symptoms worsened and on top of that I got completely new upper stomach symptoms that were frankly terrible to the point they were quite disabling on their own. Like @lelelemonade absolutely terrible reflux and for me also much nausea.
 
I'm not really up to posting but just briefly, when I got ME/CFS I didn't know I had it and I tried to keep working which was the worst thing I could have done. I got sicker and sicker and collapsed six years later with very severe ME.

For me the early onset of ME/CFS reset to a baseline to one with limits and exertion of any kind kept reducing those limits even further until I got to very severe ME.
 
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