Why patients have difficulties avoiding excessive exertion

[It's M.E. Linda]

This idea of excessive stimulation also aligns with sleep disruption and the symptom of unrefreshing sleep. My observation is that disrupted sleep precedes next-day PEM.

Whenever I am ‘out late‘ (10pm?, even earlier?, just ‘been out’ anytime after 5pm),
especially if I have been with others (let’s face it, I won’t have been out on my own),
then that immediately is a disruption to my ability to go to sleep.

Even if I have gone to bed ‘later than usual’ - 9.45 instead of 9 - I will have problems:
unable to go to sleep; and/or
eventually drop off, but be awake for an hour or so later in the night, sometimes repeatedly; and/or
wake early and unable to go back to sleep.

And I also agree:
Life has a habit of ‘getting in the way’.
Best laid plans do not always work.
‘Light vacuuming’ is anything but light. More a major task to be carefully planned.
Sometimes I need to eat urgently but have no spoons to cook for myself (luckily I live with others, but then that brings an entirely different set of ‘excessive stimulation’).

 

[Subtropical Island]

In order to be diagnosed, you have to be unable to do (or maintain) half the activity you’re used to. And that’s the mildest end of the spectrum.

Try living your life, or doing anything at all, by skipping two of every three steps in every activity, every moment of every day. And that would be at the mild end of things.

Oh, and then add to that: you’re often not thinking straight so lots of better ways to do things don’t occur to you or you mess them up.

And add that the baseline/envelope / threshold that you need to stay within changes. From day to day, week to week, year to year. Unpredictably (except that worse can be predicted if you do too much).

And there’s a delay between doing and results.

And the fact that I want to do as much as I possibly can, in this one life I have. I’d not want to miss out on things if I don’t have to. So if I do get to live consistently within my envelope, and if I do get to a symptom lull, I believe that maybe the limits have changed, maybe I can do more... which is true ...until it isn’t.

Because life has taught us to be skeptics, even if our own conclusions.

 

[arina83]

I am both used to being exhausted and can't feel it when I over do it. Plus I'm angry that my body just won't cooperate and thus I push myself harder than I should. Combine all that with help basically not being an option this year and I wind up where I'm at now. The two things I am now 100% certain of is that help isn't available when I need it and that I'm completely alone in this. Evidently my body has decided that I pushed myself too far and now sleep is just not a thing. I need a snack but its too far.

Let's not even get into how furious I am that I exercise every day, eat ridiculously well, etc and yet I am now too wiped out to sleep. The humor and irony of this isn't at all lost on me.

 

[mat]

One theory I have is that COMT overexpression plays a role in this. COMT overexpression was identified in this study (10.1016/j.jpain.2009.06.003). Via the methionine metabolism, this also has an indirect influence on the immune system via multiple pathways. Firstly, via SAM-e, it reduces HMNT activity and hence histamine methylation. Secondly, via reduced cysteine levels, it inhibits antioxidative glutathione buffers and creates an imbalance in the folate cycle. The imbalance in the folate cycle yet again creates an imbalance in the BH-4/BH-2 cycle, which reduces serotonin and dopamine availability. Both via the limited methylation and the BH-2/BH-4 imbalance, NADPH/H+ imbalance is induced and this is an essential part of many metabolic processes. The shifts in SAM-e also increase the variance of acetylcholine availability. So this part might explain why metabolic exhaustion happens after the exertion. I might do a chart some time that shows the whole system that the methionine cycle influences if SAM-e can not be recycled into the methionine cycle because I can only find existing ones that show separate parts of what I described.

Your COMT genotype, however, also determines your "mentality" and responsiveness to triggers, so to say. It determines how neurotransmitters are degraded and hence their availability. There is a variety of research out there that explains COMT in the context of neuropsychiatric diseases, aggressiveness, Parkinson, etc. This is what could potentially influence how prone someone is to excessive exertion. The genotype of COMT has been linked to CFS susceptibility (10.1186/s12967-015-0628-4) and drug response of CFS (10.1038/tpj.2016.53).