Do you get PEM from exertion while laying down? (POLL)

[Valentijn]

but how you kow any post effects are from the exertion or from other upright time ... eg walking round the house, getting your pill s out ( 30 mins) sitting up reading etc.... unless you monitor it or stay ndown all the time you cannot really tell what causes what IMO

Experience mostly. After triggering OI problems or crashes dozens of times after different activities (or non-activities), it's pretty clear which symptoms are coming after which activities.

But this is a problem that probably affects most or all patients new to having ME/CFS. OI symptoms can be especially vague and difficult to ascribe to a particular cause - hence education about OI and PEM causes, symptoms, and avoidance is critical.

Studies would be nice of course, especially for educating doctors. But there's not much biomedical funding for ME/CFS as it is, and most researchers are focused on finding answers that will make a big difference - treatments or cures, or at least mechanisms.

 

[Little Bluestem]

But this is a problem that probably affects most or all patients new to having ME/CFS. OI symptoms can be especially vague and difficult to ascribe to a particular cause - hence education about OI and PEM causes, symptoms, and avoidance is critical.

Then there is hypoglycemia, dehydration/low blood volume, adrenal dysfunction, and whatever else I am not remembering. Getting it all sorted out can be a challenge.

 

[Sparrow]

also sorry i f i have said this before - foggy today

but how you kow any post effects are from the exertion or from other upright time ... eg walking round the house, getting your pill s out ( 30 mins) sitting up reading etc.... unless you monitor it or stay ndown all the time you cannot really tell what causes what IMO


just being upright doing mundane things will make me ill

the more I stay lying down the better

but to compare the two you would eed to hav ethe much desired servant for a week or two

would be agood research experiment - also to help differentiate PEM from crashes..


A

I agree with what others have said in that what you've labeled as a "crash" sounds very much like an OI attack. It comes on within a fairly short time of being upright, I get dopy-headed, feel unwell, sometimes I can tell my heart is going too fast, eventually I get a little spacey or dizzy, etc., but lying down or drinking electrolytes, etc. can resolve those symptoms fairly quickly.

A "crash" as I would define it is PEM - it hits the following day, and I feel like I've been run over by a truck several times and caught the flu. Or if I'm lucky and it's milder, I just feel generally like crap and like I'm getting a cold. It lasts for a day or more, depending on how badly I've overdone it and how good I am about resting fully to recover.

If being upright makes you feel ill and if you lie down for a while it gets better, that's OI. If being upright wears you out and then the following day you can't stand up to get to the bathroom and everything hurts and your body feels like it's imploding, that's PEM. Note that the first one can lead to the second. Walking around with orthostatic intolerance issues is a big strain on the body, and uses up a lot of energy.

The difference is pretty distinct for me. I don't ever get OI symptoms when I'm lying down. But if I overdo it with activity while lying down, I will get PEM. I've been pretty much bed ridden for the last two years, so there have been plenty of times where I've been lying down only, and I can tell you with confidence that it's still possible to trigger PEM.

 

[Allyson]

I

agree with what others have said in that what you've labeled as a "crash" sounds very much like an OI attack. It comes on within a fairly short time of being upright, I get dopy-headed, feel unwell, sometimes I can tell my heart is going too fast, eventually I get a little spacey or dizzy, etc., but lying down or drinking electrolytes, etc. can resolve those symptoms fairly quickly.

A "crash" as I would define it is PEM - it hits the following day, and I feel like I've been run over by a truck several times and caught the flu. Or if I'm lucky and it's milder, I just feel generally like crap and like I'm getting a cold. It lasts for a day or more, depending on how badly I've overdone it and how good I am about resting fully to recover.

.

thanks sparrow - interesting' what then should we call the OI attack? i have never heard anyone use that term; do you think peoplr have used crash to decribe them both.... without distinguishing.

the thing is if i stay up several hour i wil be ill later and in subsequent days but it is an illness differnt to when i exercise.
ie i will not have muscle pain. and it will not last 4-3 days.
sorry if i am going round in crcles - but we onnly have 2 terms that i know of - crash and PEM; they seem to be useed interchageably.


best

Ally

 

[Valentijn]

interesting' what then should we call the OI attack?

OI, light-headedness, POTS, NMH. I think PEM gets its own special "crash" term because it's a discreet episode with a fairly clear beginning and end. But OI is just a collection of symptoms that (often gradually) appears any time we're upright too long, and quickly goes away after laying down. A PEM crash is also a lot more unique to ME/CFS than OI is, which might be another reason it has its own special terminology.

i have never heard anyone use that term; do you think peoplr have used crash to decribe them both.... without distinguishing.

Probably. I think OI didn't get much attention until the CCC came out ... Fukuda and Oxford definitions certainly didn't mention them, though at least the CDC website does now list OI as a CFS problem. So a lot of patients probably didn't even know what OI is, and those not active on the internet still might not. When I first got sick and got online, there were still a lot of ME/CFS patients I was seeing who didn't know what OI is ... and that will likely continue to some extent as long as the Fukuda (and to a lesser extent, Oxford) definitions are so bad.