PEM from too little activity?

@Mij, that's what we are discussing here actually - resting def makes me worse, if it's more than half day (after active few days). I tried to rest preventively, it makes me worse Sux. it will turn out GET is best option for me (you did not hear me say this )

@JaimeS, I am 31 and have ME/CFS since about 12 or even before, I remember this pattern from very early, even when it was extremely mild before my 20ies.


It's simply like choosing between 2 evils. sometimes I enjoy activities once I warm up, but starting them is torture. staying in bed even worse.

 

Then we may be rare, @Pibee ... for me, avoiding too much activity and too little is best. But I really haven't heard others discuss this, and I don't think that's just a matter of 'narrative'. I think many of the people here find this experience foreign to them.

I also had symptoms kicking up at age 12 or so, but either persisted through determined ignorance or had a remission in my late teens through late 20s. In that light, I may have a more endocrine subtype than others. I think that poor circulation may mean that moving around enough to get the blood flowing again may be better... to a point.

I guess then that the trick is to keep yourself in that 'sweet spot' of enough activity so you feel okay and not enough to crash you. No simple answers.

 

Endocrine subtype? I was also hypothyroid from 10 or so and it wasnt treated until 20, so it is hard to say what was ME and what Hashimoto then, but I think i can tell apart, and that i did have ME then too.

Btw not sure about you but my extremities are always hot, never cold feet or palms another thing opposite than most ME have.

 

I have pretty much the same experience as @JaimeS - generally on a good, PEM free day I'd feel lethargy and brain fog set in after just a matter of hours of forced inactivity. I found that dragging myself out for a gentle swim was a great way to clear those cobwebs. Aggressive resting does not work for me. Of course if I pushed past established activity baselines I would get hit 10x worse the next day with PEM so it's not a "just depressed, exercise helps" issue.

Interestingly I had a very similar age of onset and pattern of remission/relapse. I think in the past I discovered other "me too" moments with Jamie on less common aspects of the disease as well.

Maintaining the sweet spot of activity is absolutely the right thing to do for me, though not everyone likes to hear that and asserts that all exercise must be bad. I assume its some sort of balancing act between autonomic dysfunction and energy production dysfunction...

I find the advice given by @Mij to be helpful too: short, pre-emptive resting with meditation elements to calm the sympathetic overdrive.

 

Fascinating! Wow, why do we know so LITTLE?

 

PEM specifically requires some form of exertion to trigger it. PEM isn't triggered by rest or inactivity, since it wouldn't be post-exertional in that case. There are also some diseases where similar symptoms are caused by circulatory problems, thus improved with regular activity.

 

I agree calling it PEM is inaccurate. But the symptoms I get from being too still too long definitely mimic those I get from overexertion.

 

I also tend to feel worse with inactivity and lying down too much, moving around is helpful if I'm able. Sometimes I can 'snap out of it' if I go for a short walk or stretch, but other times I just can't do anything and have to wait until it passes.


It does not mimic PEM for me- not even close.

 

Yes, I thought about this when I wrote the thread. It's simply "worsening" or a crash triggered by no activity, but happens very fast. Cant be deconditioning, or I have a subtype that has too fast deconditioning.


I am hoping to find some watch that can measure blood pleasure and pulse , nonstop, not sure if such things exist re blood pressure and are not crazy expensive, because i am just missing what's happening

If my circulation "slows down" while resting, wouldn't my extremities be cold? because they're hot, a lot. Maybe it is just change on micro-level and a big one on metabolic.

I have also some bizzare situations , for example I threw up bad food and then suddenly feel better from that (in brain), this could be pressure thing but I think could it be often just a metabolic switch

Another possibility: can I just feel PEM when i stop, more than when i keep pushing? But would it be better if I force myself to get up (as it happens like this) and I snap out of crash..


EDIT: Blood pleasure. ha ha.. current level: undetectable load

 

With high-flow POTS its been noted that some people get hot extremities. Don't read into that too much though, just one possibility.

Still think a good cardiac/OI workup would help you though.

 

I think I fall into the camp of resting too much worsens some symptoms (unless I'm fully crashed).

I wouldn't call this PEM (which I do get) ....it's more fog, lethargy, headaches, heavy legs. This is elleviated somewhat by elevating legs.

I have come to the conclusion that this is circulatory. Walking gently is better than standing for me for the same reason. Sitting for too long makes my legs go numb. This wasn't the case early in my illness, although walking was a little more challenging then.

So I think if you have OI and mild ME/CFS then there probably is a variable sweet spot of doing enough light exercise vs resting. It's a balancing act I guess.

 

And in my case, exact opposite -- early in my illness it was one of my most notable symptoms that I just had to keep moving or I'd start to feel weighted down, in pain, heavy-limbed, brain-fogged, etc. But a crash does have other symptoms as well.