Why patients have difficulties avoiding excessive exertion

We patients seem to agree that the problem is usually avoiding doing too much, rather than too little. Even knowing this very well helps us little. The problem is not one of knowledge.

Some have proposed that we patients have the personality traits of being motivated and driven and that we have difficulties avoiding overexertion for this reason.

I would like to propose a different explanation. We have difficulties avoiding overexertion because:

As patients, our typical physiological state is one corresponding to low activity intensity/levels. There is a large gap between it and that corresponding to a state of high activity intensity/levels. Due to the illness, we need to stimulate our physiology intensely if we want to reach the physiological state required for higher activity intensity/levels. This stimulation can feel good and that is one reason we tend to overdo it (it may also feel like unpleasant overstimulation). Another is that this stimulation takes time to fade away on its own and in the meantime it's difficult to avoid doing more.

Patient's brains may also be more excitable than that of healthy people, which could cause problems with fine control of stimulation.

Many tasks in daily life are also not practical without being in the physiological state associated with high activity intensity/levels. You can't walk to the grocer on one day, and walk back home the next. Solving problems at mental level may only possible by carefully taking in all the relevant information and then deciding the solution. If you applied a pacing strategy to this and decided to break down the task into smaller tasks, you risk forgetting important details by the next day. Pacing is a strategy that works very well for some situations but not so well for others. Society is also largely designed for people without PEM so we're often expected to be able to sustain exertion for some time. Patients may overexert themselves because there's no practical alternative.

 

The reason I keep overexerting myself so often is because that's what happens when I'm trying to fulfill my basic needs (food, basic hygiene, vital household chores etc). It seems impossible to avoid, since I'm not able to get the practical help I need.

 

Thanks for adding this perspective. I wrote this from the point of view of someone who can still fulfill his basic needs without crashing.

Another thing I suspect that changes with increasing illness severity is the propensity for the more stimulated state to feel unpleasant and like overstimulation. This could explain why some patients describe their PEM as starting immediately with exertion.

 

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.

 

Now as I vary between moderate and severe impairment it is, like for @mango, external circumstances like needing to replace a broken washing machine or meeting basic needs that force over exertion.

However, much earlier in the course of my condition when I enjoyed spells of transitioning from moderate to mild what I, ill informedly, described as ‘an endorphin high’ was a factor in over exertion triggered crashes. I would find doing physical activity after a period of inactivity would trigger a sensation of being ‘high’ that would counteract any rational restraint and result in me extending activity beyond my current PEM trigger threshold. For example on one occasion holidaying in the Falkland Islands I was walking in the hills, and found myself running up and down the ‘mountains’ (rocky outcrops), not only risking subsequent PEM but also a broken ankle or worse. It was only half an hour in that I began to consider what might happen if I tripped or the probable impact on my ME. I interpreted this euphoria and risk taking as the effect of endorphins though there may be other better explanations.

Other times frustration could be a trigger for over exertion. I recall on one occasion when
I still had an allotment, visiting it after several weeks, and being so angry with myself not having done anything that I forced myself through the pain and fatigue to cut the whole boundary hedge on all four sides in a single go, and obviously suffered a major crash.

 

McGregor also have reported hypermetabolism in patients during the PEM.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6787670/

 

...because excessive exertion is often an activity that would be considered just part of normal daily life by people without ME.
And daily life has to go on. Sometimes things don't go to plan in daily life or they go wrong, and they have to be dealt with. If I crash, it’s because of this. I don’t ever plan ‘excessive exertion’, or think that an activity which stretches me cognitively or physically is a good idea. Sometimes i have to do it anyway.

 

Pretty much. The "work" required for simple daily living is at least 5-10x more than what people with ME can do, for a fulfilling active life. It's nothing to do with worries, it's obligations, made worse because people have expectations of normal performance and can't comprehend why we can't do simple things. Whether it's work, chores, hobbies, kids, socializing, whatever. Those are not things that can be put off indefinitely.

Light tasks like vacuuming is not a "boom" of activity, and yet this is about the level of what I can do as a "main" task for a typical day, as in the most "active" thing I can perform. Something so trivial my former healthy self would barely even include it in "things I did today", it's so far down the list.

It's like trying to live the life of a multimillionaire on minimum wage. It simply doesn't work.

 

Why do we have difficulties avoiding excessive exertion? I'm surprised you ask! Do you not know that it is that pesky kinesophobia, our fear/phobia of movement that causes us to do so much?! Surely you have been around long enough to know that.

Sorry @strategist I couldnt resist.

Seriously though, this is the issue for me

 

Ditto

 

I find that PEM is the biggest cause of disrupted sleep for me. Then the sleep disruption means it takes much longer to recover from PEM so sleep continues to be disrupted until I clear PEM.

However, if I have been active (for me, not a normal person) then having a lie down and allowing myself to fall asleep if I need to can avert PEM plus I will sleep better that night.

For me the sense overstimulation is a symptom of overexertion. It means I didn't (or couldn't) rest soon enough or for long enough.

 

Same for me.

 

Perhaps it is also because one week we can do a certain activity each day okay without payback, and then the next week that same activity is over-exertion. There is not a stable threshold.

 

Cognitively - boredom.

Sometimes in order to avoid PEM (in severe patients), you need to do nothing and think about nothing. This is not possible if you are awake.

 

Ditto, Ditto.
To have the help I need, and I don’t consider myself a severe case, I would need: a daily cleaner/tidier, a cook ( I am bedbound except for these things); a chauffeur (I am housebound), a bookkeeper, an IT technician, someone to run ordinary errands, someone to remind me of calendar appointments on the right day, someone to do online research if I have to buy a new stove, and someone to make telephone calls who can communicate for me...
I am lucky and have support from a very affectionate family; but they are desperately busy, and so I have to make a stab at these things, and they take me SO LONG.
I think it’s wanting, or having, to finish whatever little thing I’ve started (usually stupidly) that causes my PEM.

 

I'm just so incredibly lazy.

Far too lazy it seems to put in the required effort needed to stop doing things that I have to do.

Far too lazy to push through the impenetrable fog and come up with sensible priorities, rather than 'ooh!! that's shiny, wanna do it, now!!'


(now being a 'flexible' concept meaning it goes on the 'list' in my head, and if it doesn't just drop out due to it being misplaced or get filed incorrectly in the fog, it will remain on the 'list' indefinitely to be remembered whenever I am in the same situation again but don't have the resources to action it - until, after a few months/years, it's just so damn annoying that it gets at least started, and everything else be damned).

I'm just lazy, that's all - and I really like PEM, it's great - the whole feeling like crap, dizziness, being unable to realise that the reason I can't see is coz the lights off and it's night, or stand, or what the annoying noise is (the timer I set only 5 minutes before to let me know my teas brewed) - and socks, a different puzzle every time - it's absolutely fantastic - I can't get enough PEM

 

[

Possibly the 'holiday effect'?

I'm not good at having people do things for me, I find it much more stressful - but that could be down to my ASD - it took me until past 30 to get used to anyone making me a coffee, let alone cooking - and as for anything else - forget it.

I do not, unless socially obligated into it, go to cafes or restaurants because of this.