PEM from too little activity?

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Pibee

Senior Member (Voting Rights)
Hello

I'm trying to figure out how my ME/CFS affects me, it is so complex.
I noticed that each time when I fall into a trap of staying home 2 days in a row, my fatigue gets worse. 3rd or 4th day even worse. When I manage to snap out of it, then it gets better.

Of course this would be ideal - nonstop activity, if it's not also that I suffer when I have to force myself for activity.

But I wonder do I actually get "PEM" from too little activity too?
 
I am nonstop reading, chatting, watching movies. I never ever rest my brain (although I have also ADHD -so not very productive). But I didnt have ever problems with that. Whenever I get up from couch and go for a walk (if i'm crashed from too little activity), it gets better fast. So I had an idea this is metabolic, when body is too little active my metabolism goes totally off... but I dont know how and if, that makes sense.

I also have feeling i spend 90% energy to start (physical) activity, when I start I'm good, as soon as I stop, sit, lay, within 1 minute I crash.
 
It could be that the 3rd and 4th days of feeling bad are part of the reaction to the activity that resulted in you staying home. That is, they are part of post-exertional malaise (PEM). PEM can be brief or it can last weeks, depending on how much exertion you did and probably lots of other factors.

Maybe you walk when you are feeling better, rather than you feel better when you start walking? And you lie down because you are starting to feel bad, rather than you feel bad because you lie down?

Watch out for a NZ study that should be published in the next year that measured people's ability to exercise, along with a range of respiration parameters (e.g. heart rate/work rate when anaerobic threshold is reached) at base line and then 2 or 3 days after. I think there is also another NZ study underway looking at cytokine production at various times after exercise.

Another possibility is that moving helps to increase blood circulation and so makes you feel better for a while.
 
Hutan said:
It could be that the 3rd and 4th days of feeling bad are part of the reaction to the activity that resulted in you staying home. That is, they are part of post-exertional malaise (PEM). PEM can be brief or it can last weeks, depending on how much exertion you did and probably lots of other factors.



Maybe you walk when you are feeling better, rather than you feel better when you start walking? And you lie down because you are starting to feel bad, rather than you feel bad because you lie down?
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I'm sure this is not the case. I had this situation at least 100 times. I feel 1st day need to rest, that's okay, 2nd day is totally depending on my choice and my obligations, when I have to go, then is best, it is pacing at my best level. When I dont go, it gets worse 3rd day.

So i did both ways many times, I def get worse from too much resting.

Another possibility is that moving helps to increase blood circulation and so makes you feel better for a while.
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This is more likely, I think yes.


I am just curious what happens on metabolic level to crash so fast when I stop
 
Pibee said:
I am nonstop reading, chatting, watching movies. I never ever rest my brain (although I have also ADHD -so not very productive). But I didnt have ever problems with that.
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This would give me PEM. I never had problems from overusing my brain cells, but I do now. Big time. I try to balance out my physical and mental energy, both are affected from overdoing the other.
 
Mij said:
This would give me PEM. I never had problems from overusing my brain cells, but I do now. Big time. I try to balance out my physical and mental energy, both are affected from overdoing the other.
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Yes for me it doesnt give PEM, when I experimented with treatments I had first time in life attacks of such mental PEM, i def would recognize it. It is hell.
I probably spontanously avoid mental activities that do cause PEM for me, I can not focus for long time and postpone it when I absolutely have to etc. Or I make long breaks when I work, so I spread my work over long time, with much resting.
But for me resting my brain is chatting or reading material that doesnt require much focus, and music.
 
Walking for more than a couple of minutes is guaranteed to cause me PEM and if I already have PEM walking definitely makes things worse rather than alleviating. Amazing how different people experience this in different ways. Edited to add standing in a queue or in a room full of people eg social event is the absolute pits tho I would rather walk than mill around.
 
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It will fascinating when they figure out the mechanism of PEM. My PEM (both cognitive and physical) began when I was feeling well enough to exercise, then it all went downhill from there.
 
Hutan said:
Another possibility is that moving helps to increase blood circulation and so makes you feel better for a while.
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I go along with this train of thought and would expand to say that lack of orthostasis could be having negative effects on your blood volume and overall function as a result.

Have you been investigated for OI problems like POTS? I am very negatively affected by lack of activity and its not something that takes weeks of 'deconditioning' to occur, I assume it is dysregulation happening on a much shorter timescale.
 
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Pibee said:
Yes for me it doesnt give PEM, when I experimented with treatments I had first time in life attacks of such mental PEM, i def would recognize it. It is hell.
I probably spontanously avoid mental activities that do cause PEM for me, I can not focus for long time and postpone it when I absolutely have to etc. Or I make long breaks when I work, so I spread my work over long time, with much resting.
But for me resting my brain is chatting or reading material that doesnt require much focus, and music.
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Just a short note you might not have considered. I don't know how long you've been ill but whatever you have learned from experience about your symptoms you will have to relearn (or simply adjust). What you know now about your ME will change over time. I think this is true for everyone to some degree.
 
Ryan31337 said:
I go along with the this train of thought and would expand to say that lack of orthostasis could be having negative effects on your blood volume and overall function as a result.

Have you been investigated for OI problems like POTS? I am very negatively affected by lack of activity and its not something that takes weeks of 'deconditioning' to occur, I assume it is dysregulation happening on a much shorter timescale.
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Absolutely. I didnt yet measure OI, but i lay whenever possibly I can lay, although I dont feel much drain from sitting (when i socialize).

I am positive for 8/9 CellTrend, some are 7x increased, think this is good lead.

How long it takes for your 'deconditioning' to occur?

I was best before I did any treatments ( familiar? probably to many :( ), i was quite active, maybe 80% of normal person, but I suffered a lot, esp because cognitive dysfunctions that are a bit outside of CFS definition (like apraxia).
 
Mij said:
It will fascinating when they figure out the mechanism of PEM. My PEM (both cognitive and physical) began when I was feeling well enough to exercise, then it all went downhill from there.
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Same happens to me recently, I felt better - went roller skating, then had severe mental PEM attack later. One day I went out 3x in a day, which happens rarely lately, and again that night severe mental attack. I never had mental attacks and the skating thing also happens rarely. SO had both extremes in 1 day.

Our body's activity-meter is off.

Before I had nonstop same state, no surprises. I knew my limits and I just did that, I'd not crash, but now is more unpredictable, and goes to both extremes, good and bad.
 
Also, so many times I feel like I am dying .. but then when I decide to get up, go out, after 5 minutes I feel great (for CFS person :) ), smile, laugh, all good, energetic...

this is a real Torture Mind-Fuck Disease..
 
I admit I didn't read much of the comments here, just the first.

I started experiencing this once I got much better, and began to wonder if this is why the GET people remain so keen. Now that I'm "very, very mild" I start to note it's bad for me to be inactive too long (unless I'm crashed, of course). If I spend more than a few waking hours in bed I start to feel worse.

I still can't "work out" for better health and I still can't increase my capacity by doing more bit by bit. However, not moving when I could be moving and be okay seems to be a bad plan.

Could be metabolic, could be a circulatory issue. Note: I NEVER experienced this until I was basically a 3/10 on the ME/CFS scale, where 0 is no symptoms and 10 is fed through a tube and barely able to speak. I used to be maybe a 6.
 
@JamieS, Yes, this is exactly how it is for me. Optimal is up to 4 hours in bed, then go back to activity. If more than this, I just get worse and worse. But getting up is hard, so it is torture.

I thought that once I have no school I'll get better because will have more energy/time - wrong, not needing to get out of house just makes me crash and become less productive.
 
@Pibee have you considered pre-exemptive resting? Try not to drain all your reserves (mentally and physically), rest even when you're feeling ok. It helps keep your nervous system calm throughout the day.
 
Pibee said:
But getting up is hard, so it is torture.
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That worries me, though, @Pibee ... I'm talking about being basically okay, here. Not to the point that getting up is "torture".

I also remember that during onset I felt the same way. That I just felt better if I were moving. That, too, was when I was milder and on my way down.

I really wonder what the mechanism is.
 
Perhaps increases and decreases in metabolic rate can be detrimental. Perhaps we have a narrow tolerable range?
 
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