For me, PEM is a different kind of feeling. As I posted on another thread once, I never got symptoms like dizziness, nausea, fasciculations (tiny muscle twitches), headache, breathlessness (not during the exertion, the next day or two, after the PEM hits), etc. Even after doing serious exertion, such as climbing to the summit of Mount Hood, these kind of weird symptoms never hit me.
And these days I never get any normal muscle soreness (I actually kind of miss that feeling). When I do get muscle aching it's a different sort of ache, an ache that feels more like a tetanus shot or a typhoid shot. But that kind of weird muscle ache is different from the normal kind of soreness/ache that happened to me after increasing the difficulty in my weight lifting routine, or hiking a longer/steeper route, or anything like that.
Anyone who has lifted weights and gotten a shot can easily agree that those are two different kinds of muscle pain, right? (I hope? Maybe it's just me?)
Exactly, exactly exactly. For example, No disrespect to the MEA AT ALL, but i always hated the way they describe one of our symptoms as 'exercise induced muscle fatigue', i mean surely everyone has that?
everyone's muscles feel tired after exercise - it just depends how much exercise - & that feeds in to the deconditioning theory.
The point is that, having been a sporadic exerciser in my pre ME days, i would, several times a yr, start a new program & be barely able to walk the next day - eg after horse riding i couldnt straighten my legs, but i would never report that as illness - I just went in to work walking like a cross btwn a penguin & John Wayne.....that is a
normal sensation. And incidentally this is one of the things that infuriates me most about the deconditioning proponents' twaddle about 'misinterpreting normal sensation' - it's so patronising to assume that a middle aged woman cant tell the difference!) - the point is that what we're reporting is NOT normal sensation.
Its not that there is
merely an abnormal
amount or
severity of pain/fatigue after exertion, but that there is abnormal
Type of pain/'fatigue'/flu like symptoms/cognitive decline etc.
I mean i once started a such a program where in the days after starting it i was heard to say "I'm so knackered i feel ill", but now i realise i didnt really mean that - I was exhausted but i didnt actually feel
ill, it was just a way of saying '
utterly exhausted'...... never once was I unable function, unable to understand written or spoken english, never had to have things spelled out to me as if i had a severe learning disability, never once went to speak & only slurred gibberish came out, i never once swung violently from hot to cold, & my elbows wrists & fingers never throbbed when i'd been exercising only my legs. And i never once felt a footstep on my bedroom floor vibrate nauseatingly through my whole body, or found the sound of a rustling paper bag or the slightest bit of daylight excruciating.
It's completely
abnormal, it needs a new word, none of the vocabulary we have comes anywhere close imo.
Which is why
@Leonard Jason, i really like the new version of the questionnaire - the use of the word
abnormal is critical imho. And thank you SO so much for coming here to share this with us, you are doing such excellent work in a very tricky area. Kudos to you for being willing to discuss in open fora like this. Its very much appreciated.
Enviromental factors: heat, sensory stimulation (noise, lots of fast moving visual info such as travelling in a car) are also common triggers. In my own case environmental factors are far more likely to trigger PEM than emotional one, but that may not be true for others.
Yes this is true for me too.
I find sensory issues get overlooked a lot in research but they're such a huge factor in my ME, i often think they would be a good way of subgrouping.... but sorry thats a tangent.
ETA the word 'merely'
