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

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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wingate said:
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.”
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Me too Wingate.
I hang onto hope of a change (in how I manage daily living) somehow improving my prone state but with thoroughly confusing results. There are (as yet) no clear answers.
Ive gotten gradually worse as Ive aged with no remarkable periods of good (ME symptom -clear) health … extended times of severity, more or less pain, reduced access to my brain , all fluctuates regardless (in general )of how I look after myself/live. (Def notice more of an impact with social activity now. Can take several days , even weeks, to recover from all the Stimuli ).
 
lelelemonade said:
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)
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Not sure if this has any more interest to anyone but I too had IBS (in the earlier stages of being -unwittingly- ill and pushing on). Born 10 weeks early my digestion has never been good (compromised stomach lining development was suggested to be a basis for later allergies and intolerances. Nausea part of daily life - motion sickness not unusual (grew up seriously car/boat/train even sometimes plane sick).
Wish I could understand , be more constructive in thinking of your initial questions Trish.
 
The first big crash that took me from mild to moderate was caused by GET.

The second big crash was caused by Covid, about 2 weeks after my acute infection cleared I crashed really badly and that sent me from moderate to very severe with major feeding issues for 9 months.
 
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Hello friends, things are a bit complicated for me.
- 2016 = extreme fatigue on vacation, totally abnormal in hindsight. My wife didn't understand. I was unable to do even a long hike, the fatigue was overwhelming. Blood tests were normal.

- 2019/2022 = dependence on low doses of tramadol. 100 mg per day. I stopped many times only to start again a month later. Withdrawal was difficult.
- 2019 = gastro symptoms
- January 2022 = after mixing alcohol and tramadol (I was drinking too much on weekends), I got up and fell to the floor. My right quadriceps stopped responding and vibrated like a phone. I got up 30 seconds later. A few hours later, the nightmare began = tingling and burning sensations all over my body. Then a strange sensation, my brain felt like it was in a tunnel, my foot felt electric, I had cramps, and I was sensitive to noises... Everything came back normal on a lot of tests at the ER.
Twelve days later, I caught a terrible case of COVID, even though I'd been vaccinated four months earlier. I was completely wiped out, but could still work full-time. However, I experienced strange, intense fatigue after long conversations and museum visits (PEM?).
I was diagnosed with a Lyme infection, with a fairly high IgG but not within the normal range, and a very positive Western Blot. I took antibiotics for two months and then started taking tramadol again. I got back into sports, and everything was getting better and better. But I have some after-effects: dry eyes, dry mouth, a hangover-like feeling in the morning, and sometimes fatigue.

- April 2023 = After a big night out with friends, I took cocaine (I've only done it six times in my life) and alcohol. The day after that, I had a drink and wanted to take a little tramadol again (I'd been off it for four months). I went for a run.
30 minutes later, a strange sensation swept through my body, like a sudden change... A few minutes later, I had a terrible spasmophilia attack. Firefighters, hospital... nothing to report.
Since then, my brain panics when I drive, go shopping, or after 30 minutes of exercise. My sleep has become erratic (waking up at 3:30 am). A hike in Italy almost killed me (strange heart palpitations, a feeling of impending death). I got sick very often that year: 7 bouts of tonsillitis! Only one thing calms my system: alcohol. And especially the next day.
- At the beginning of 2024, things were better. I could run for 45 minutes, but my body felt strange afterward. Weight training is impossible because when I push, I feel like my brain is going to explode...

- May 2024: First near-miss PEM after two days of intense work at a book fair: lots of driving, talking, carrying boxes... The second day, at the end of the day, I couldn't drive or talk much. I fainted in the car. In the evening, I felt better but a little shaken.
A few weeks later, after an evening with friends, I wanted to go for a run two days later. It went well. The next day, while gardening and dancing, I had sensations of imminent death, with a racing heart and panic. I was given antidepressants, stopped quickly, and for 5 days I felt cured, better. Then, after a 40-minute walk a few days later, I felt unwell, like I was dying. I developed a mild POTS (60/65 standing, 105/115 standing).

- September 2024, Covid. Severe Covid... the antibiotics are making me feel strangely unwell. Thinking I just have a mild case of COVID-19, I do rehabilitation with cycling and weights... I do this 3 times a week. But it's not going too well anymore. I'm still working full-time (I work from home) but I sometimes need to lie down. In December, like an idiot, I decide to run again. Day 1 = OK Day 2 = worst possible tetany attack. My whole body convulses, spasms that heave my body... I'm a firefighter, and then it's the beginning of the end...

2025 = I continue walking with my wife and children, then in February, one too many brisk walks. Too many medical tests... In March, I end up in bed and I never leave it again. My condition worsens because I can tolerate the medication less and less. I had a poorly performed stellate ganglion block in October, which worsened my condition and stopped the effects of LDA...
Since the beginning of 2026, I still feel unwell... my heart beats fast despite taking Nebivolol, and I often think about euthanasia because I feel like my body is breaking down. I have a feeling of accelerated aging.
In short, why? Because of my stubbornness and the lack of information surrounding the illness. I should have been mildly ill, even in remission. But I was told to do sports and that I had panic attack syndrome. CBT psychologist and sports ruined me.

Sorry for the long message, but it's complicated...
 
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