I'm able to exercise but am still disabled

jnmaciuch said:
Between this and some other details you've mentioned, I'm getting the sense that your ME/CFS seem quite unique compared to both my experience and what I've heard from many other people.
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Not totally unique. I've read posts by a few other PWME who were continuing to do bodybuilding at levels way beyond my bike rides. I think outliers like myself are useful for ruling out some theories about ME and PEM. It's not absolute ruling out, since there could be possibilities where a theory is correct, but there are unusual circumstances where an individual has an unusual bypass/correction mechanism, but it still helps decide which theories are more likely to be worth investigating.

Sean said:
No way I could do a 40km bike ride, or any comparable physical activity, without very serious payback, and the real risk of a permanent worsening of my health status.
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Yet another variation: even the activities that did trigger PEM never resulted in more than a day or two of feeling lousier. I think food intolerances caused more severe symptoms that PEM did. Microbiome changes (so I assume) caused significant raising of my baseline severity, but could switch off (and on) abruptly. I think that reflects chronic triggering of more severe symptoms, rather than a change in the mechanism that causes the symptoms.
 
Creekside said:
Not totally unique. I've read posts by a few other PWME who were continuing to do bodybuilding at levels way beyond my bike rides. I think outliers like myself are useful for ruling out some theories about ME and PEM. It's not absolute ruling out, since there could be possibilities where a theory is correct, but there are unusual circumstances where an individual has an unusual bypass/correction mechanism, but it still helps decide which theories are more likely to be worth investigating.

Yet another variation: even the activities that did trigger PEM never resulted in more than a day or two of feeling lousier. I think food intolerances caused more severe symptoms that PEM did. Microbiome changes (so I assume) caused significant raising of my baseline severity, but could switch off (and on) abruptly. I think that reflects chronic triggering of more severe symptoms, rather than a change in the mechanism that causes the symptoms.
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I think the main concern from a research perspective is: if outlier experiences of a disease without a known biomarker deviate very far from the norm, it may actually be very different disease mechanisms for those outliers, not just that there's an unusual bypass/correction mechanism. Either there are multiple ways to end up with a similar symptom presentation, or the main similarity is something very far downstream.

If it is a case of converging at a far downstream mechanism, that downstream mechanism is obviously important and should be accounted for by a good theory--but a theory should not be discounted because the proposed upstream mechanisms don't match the experience of outliers. Using outliers as a litmus test would really only be useful if we already have a known biological mechanism where all cases must converge.

Also not doubting your experience nor saying you don't have ME/CFS, just cautioning against using more uncommon experiences as a metric for gauging which theories are worth investigating.
 
This might be controversial but I believe the range of different presenting symptoms across ME/CFS indicates different underlying pathology even if there is also some common pathology as well.

Creekside has provided lots of exercise related ancdotes that are atypical. My experience may be atypical too due to an atypical trigger.
 
Snow Leopard said:
This might be controversial but I believe the range of different presenting symptoms across ME/CFS indicates different underlying pathology even if there is also some common pathology as well.
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Yes, I think I might have come in through something like Reiter's. I don't get the swollen joints though. I tried to explain to a GP when 20 years old that something significant had happened. I was never referred or given any idea what could have happened. I wouldn't have even known what specialist to see about it.

Ten years later I get ME via a bad cold.
 
Creekside said:
Can anyone think of an experiment that would keep exertion level the same but change the amount of muscle cell damage?
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An obvious experiment testing that would be a strong massage, versus lying on the massage bed for the same amount of time. As I've mentioned elsewhere, I reliably got PEM after strong massages, enough times that I realised what was going on and stopped having massages. So, that would be an experiment I would really like to see done.
 
I recently did 2 high activity days in a row and ended up with persistent burning muscle pain on the following days, then low energy to the point iI hardly did anything, and difficulty tolerating any stress and poor mood in response to mildly unpleasant events.

I also remember a long and demanding bike ride where I really abandoned any caution and where I ended up feeling like my heart was overstressed and overstimulated (very similar to POTS) and had the strong urge to do very little for about a week. It was demoralizing and I wondered if I had caused permanent damage.
 
Hoopoe said:
I recently did 2 high activity days in a row and ended up with persistent burning muscle pain on the following days, then low energy to the point iI hardly did anything, and difficulty tolerating any stress and poor mood in response to mildly unpleasant events.

I also remember a long and demanding bike ride where I really abandoned any caution and where I ended up feeling like my heart was overstressed and overstimulated (very similar to POTS) and had the strong urge to do very little for about a week. It was demoralizing and I wondered if I had caused permanent damage.
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I had quite a low mood yesterday and the day before. Also the signs of PEM, legs affected, heart and breathing felt strained and more difficult and other symptoms. I know how this came about. Sunday last I had to get out to the garden and tidy up a row of weeds along a fence line. I couldn't leave it any longer.

I have to keep reminding myself that this low mood with my ME is part of PEM and when I recognize it I worry that I am falling into a depression and I notice I start thinking about negative things, such as 'I am so fed up with all this' 'I don't want to go on anymore'. I am pretty sure this is just situational for me because I do feel joy and look forward to things when feeling better.
 
AliceLily said:
I had quite a low mood yesterday and the day before. Also the signs of PEM, legs affected, heart and breathing felt strained and more difficult and other symptoms. I know how this came about. Sunday last I had to get out to the garden and tidy up a row of weeds along a fence line. I couldn't leave it any longer.

I have to keep reminding myself that this low mood with my ME is part of PEM and when I recognize it I worry that I am falling into a depression and I notice I start thinking about negative things, such as 'I am so fed up with all this' 'I don't want to go on anymore'. I am pretty sure this is just situational for me because I do feel joy and look forward to things when feeling better.
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I also get this sometimes. PEM just messes with my emotions. It got a bit better after starting a medication that helps with my sleep, but I suspect that it just tones down everything. I don’t mind that, I don’t need to experience full emotions when I’m mostly suffering anyways.
 
For what it's worth, deconditioning seems to lower my PEM threshold. When I was sicker, both my conditioning and PEM threshold pretty much stayed constant since I couldn't exercise. Now that I can, 2x8 pushups, if I haven't done it for a while, bring about a short crash the next day. One could consider it a normal post-exercise fatigue, but that it does feel different qualitatively. It's not normal anyway for healthy people, regardless of their conditioning, to spend 4 hours lying down the day after doing 2x8 pushups.

That kinda jibes with my theory that ME/CFS/PEM is a hypersensitivity to the damage caused by exertion. The more deconditioned you are, the more damage an exertion incurs. Conditioning may reduce the damage from exertion, but it won't reduce the hypersensitivity. And that's what GET gets wrong.
 
Hoopoe said:
I recently did 2 high activity days in a row and ended up with persistent burning muscle pain on the following days, then low energy to the point iI hardly did anything, and difficulty tolerating any stress and poor mood in response to mildly unpleasant events.
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I find unexplained low mood and irritability is a precursor, analogous to a migraine aura, heralding the onset of PEM. Also increasingly I have noticed when I am doing too much I reach a point where I just want to cover my ears and scream if anyone talks to me.
 
Yes to irritability too. Maybe we need a poll for that to see whether it should be included in the criteria for ME. When I'm having a good day, I'm not irritable.

I had a neighbour who abruptly became extremely hot-tempered. His wife and kids were terrified of him. One selenium supplement tablet, and he switched back to calm again. So, it doesn't take much to affect a person's irritability level.
 
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