-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Is PEM a crash? Is a crash PEM? Semantically distinct? Or distinct phenomena?
Andy
Retired committee member
Actually, given enough time, my brain has reminded me that I have previously used 'crash' to describe what I would now term 'PEM'.
DigitalDrifter
Senior Member (Voting Rights)
I don't like the term PEM as it makes it sound like you get the flu for a few days rather than something more serious. I prefer the term LTSE which implies a longer lasting effect, that more accurately represents what I experience.
Yes! I think that this question/topic is onto something. It would be interesting to detail and categorise by severity and to hear the first-hand of those who have gone between these severities on how it varies. I've not been very severe, just severe which is bad enough I can see that is unimaginable and the strength involved with enduring that should have so much respect and humility.
I'm hesitant to try and summarise the difference between the two as it is much more complex than what laypersons might want to hear and getting the words correct to not demean the experience and misrepresent is so hard (but has to be better than the words used by BPS focusing on symptom-narrative so someone in agonising pain is seen as 'listless').
But if 'crash' is being 'out' (all-body) - related to energy/functionability, PEM is like an extreme rheumatic, migraine, feels like poison 'bam' and can 'keep going'? And (partly as more fragile body is -like if you were ill with glandular fever or had a migraine already) comes at a lower threshold and more intense 'amount' the more severe you are. So the 'cumulation' possible when you are more severe vs mild.. at some point (and it not being as neat as this) in the spectrum the two lines 'cross' - and vulnerability/sensitivity of condition vs 'situation' and ability to avoid that harm must also play a part in that (but also impact increased). It is quite a key one from the perspective of basic safety for patients to get this unpicked.
The other biggie is when I hear those more severe talking of being stuck in 'up-regulation' - it's a term that makes sense from an inner-body experience (and I think many with ME can 'see' and at least imagine to understand even when they haven't been that severe) but I don't know whether the term is accurate/misleading to a specific process. It seems like not only are you more vulnerable to PEM on PEM but the body can self-perpetuate it (so ill can't rest and are in pain which begets more exhaustion which causes PEM in itself)?
I'm struggling to get words right but it feels like doing so, and focusing on the 'spectrum' is so key on elucidating mechanisms and helping understanding with this condition vs what someone will actually 'see in front of them' with different severities vs situations?
That sounds familiar. I've just 'discovered' there is definitely a new level of recent years on the PEM front though (in severe), although I think I already knew it from 'holidays' and having to realise they weren't possible when moderate. If this extrapolates as people get more and more severe..
More detail below if you want it - but still under the weather so I'm sorry it is an essay and feel free to ignore if you aren't up to reading a long ramble of someone else trying to describe a plight (it's helpful for me to note it and try and get my thoughts down for it)!
I recently had a medical appointment. I'm severe currently. Obviously it was booked way ahead and rested to get there (not far) and 'be present'. I can say to people who need to know "I'll be in a crash for x weeks after this" which means extra fragile, unable to function - basically logistical instruction (I actually don't know when the crash ends now as urgent appointments tend to crop up before that could be tested).
What they don't know or get is the PEM that for my last few appointments have hit at night following morning appt and straight to bed to try and minimise until it hits. I've had really bad glandular fever in the past with massive glands out from it and other really vicious virus reactions - I'd describe the PEM as being like the 'hit' you get when your body goes 'all rheumatic and inflamey' and you can almost hear it pulsating and whirring in this (I'm imagining when your computer goes into that fan whirring heating phase but that's just part of it, it's almost like you go through a 'hit' for short time where it's like your feet get lifted off the bed), it's an 'exertion' in itself but it's probably around x 100 the level of pain of the worst day of very very bad glandular fever. It is take your breath away stuff, being on a rollercoaster situation even when you are trying to rest through it. Just a massive hit, every part of your body and brain and eyes, nothing can touch anything and no way you can 'be' is any rest or comfort.
It was 'holding on to get through' screaming abdabs 'don't talk, don't move' for anything around you, can't rest. And that was with large doses of ibuprofen in my system. Pain feels like poison through certain bits like arms, roasting hot inflamed hands, ankles (which start 'clicking' just from moving a finger) probably other parts but these bits are so obvious, legs like they are in spasms when they aren't in spasm. I think something happens on the memory front it is that bad because I feel I can only describe it somewhat because it is so recent because it is like a hit and run 'bam' but then you still aren't OK once you've got through that (and you feel exhausted from having 'got through it'). I can almost see how just enduring that could give you PEM itself ironically
When it 'calms' maybe 18-36hrs later and you've got through the worst can't function and are still in massive aches and pains and can't get comfortable anywhere (I'd describe this bit as the level when I was moderate and had done a full on full-time job peak time to crash, and the 'start' of that crash where I'd have to rest for 4 days to get rest 'not in pain'). I've not 'timed' how long this lasts but think it is a lot longer than it used to be when moderate as a phase - and the issue with here is that I need to get to the rest phase before I get too much more exacerbation as it feels like body is 'eating itself' ie still 'in exertion'. Then what I would distinguish as the 'rest part' of the crash would ideally happen.
PEM when I was moderate was probably the (still agonising just not to this new unimaginable level) continual ongoing pain I carried and thought would end up being something like RA or lupus or I didn't know but it was almost constant (except in that 'after 9 days of total rest' just before I went back to work hour) because of my situation. I find it difficult to compare these two levels because you can't but I do remember occasions where I described it like poison running down my left arm pain then at various points.
But I do remember stopping going on holiday because (even if you picked and planned v carefully to limit travel to minimum time, max comfort) this sort of exact pattern and symptoms of 'PEM hit' would happen x time after the journey day. And there was no holiday long enough to go beyond the crash where I could function a bit on normal time and it's impossible to avoid and lock yourself away from exertion for various reasons (and then of course there was the same on the way back which I'd be doing still in said crash).
I think the thing is as you get more poorly you initiate PEM from much lower levels, so even whilst you are in 'a crash', so the 'rolling PEM' can outlast the 'crash' length because it is theoretically infinite/the whole thing starts to meld, if you can't find some way of getting control of your body+environment that can stop it being triggered (and the more sensitive it is to PEM being triggered because the more ill it is)? It isn't ideal really is it because there are few levels of severity where many of us have the leeway to spot 'PEM' because of the getting on with it thing you have when milder etc. so it's normally 'rolling' in some way it is just so much more obvious when the 'start' is when it is a big hit knocking you off your feet.
Ravn
Senior Member (Voting Rights)
The main messages I take from this thread are
1) The terminology is a mess. We all use the various terms crash, PEM, relapse, deterioration, flare up, relapse, etc. differently. In some contexts this doesn't matter much, e.g. if we're just using them as shorthand to communicate that we're currently feeling much worse than usual. At any rate, it's not realistically possible to get all pwME to agree on common definitions and apply them consistently. For day-to-day use we're stuck with that mess of a terminology.
2) Sometimes, however, it is important to clarify what's being talked about, notably in the context of research and in the clinic. This applies especially to PEM because that term is in the diagnostic criteria and the frequent confusion with "normal" exercise intolerance potentially leads to misdiagnosis with all manner of downstream problems from there (as discussed extensively in other threads).
3) The fact that many people use more than one term for describing their symptom exacerbations is interesting because it suggests they perceive different patterns - which may, possibly, tell us something interesting about underlying mechanisms, even if we can't agree on the terminology.
For myself I distinguish between
a) what I call fatiguability, i.e. immediate post-exertional symtoms that I can 'rest off' within a few hours and, provided I've stopped exertion early enough, no PEM follows so this feels like potentially a different mechanism to PEM itself
b) what I call early PEM, i.e. minor symptom increases 4-6 hours post-exertion, these follow a distinct pattern and subside again after a few hours but are always followed by PEM the next day so I view this as part of the core PEM mechanism
c) what I call main PEM, i.e. the classic PEM with a delayed peak, this also follows a distinct pattern though severity and duration of symptoms depend on level of overexertion, eventually there is a return to my usual level of function
d) what I call permanent deterioration or loss of function, this follows an episode of severe PEM and implies what it says on the tin, i.e. I regain some but not all of my pre-PEM function
e) what I call rolling PEM, i.e. when after one overexertion you don't wait until returned to pre-PEM function before overexerting again, basically PEM on top of PEM leading to a downhill slide in function
f) what I call subclinical or cumulative PEM, that's when you get within a hair's breadth of triggering PEM and you think you got away with it, but do this 3 days in a row and the cumulative exertion ends up triggering PEM [the difference between a) and f) is that in a) there's immediate symptom exacerbation but in f) there's none until PEM strikes]
I also have a sneaky feeling that different types of exertion have different effects but that's difficult to confirm because few exertions are purely of one type.
I know physical exertion alone can lead to all of the types of symptom exacerbation above.
Orthostatic exertion alone can, I think, do all that, too, except possibly d), unsure on that one.
I'm not sure about cognitive or emotional exertion or sensory overload alone. Each can definitely lead to a bad case of a) and do so very quickly. I speculate that this quick brain shutdown actually protects me from PEM triggered purely by brain exertion. Of course most of the time it's not pure brain exertion but a mix of that and of orthostatic and/or physical exertion, and PEM is always on the cards then.
1) The terminology is a mess. We all use the various terms crash, PEM, relapse, deterioration, flare up, relapse, etc. differently. In some contexts this doesn't matter much, e.g. if we're just using them as shorthand to communicate that we're currently feeling much worse than usual. At any rate, it's not realistically possible to get all pwME to agree on common definitions and apply them consistently. For day-to-day use we're stuck with that mess of a terminology.
2) Sometimes, however, it is important to clarify what's being talked about, notably in the context of research and in the clinic. This applies especially to PEM because that term is in the diagnostic criteria and the frequent confusion with "normal" exercise intolerance potentially leads to misdiagnosis with all manner of downstream problems from there (as discussed extensively in other threads).
3) The fact that many people use more than one term for describing their symptom exacerbations is interesting because it suggests they perceive different patterns - which may, possibly, tell us something interesting about underlying mechanisms, even if we can't agree on the terminology.
For myself I distinguish between
a) what I call fatiguability, i.e. immediate post-exertional symtoms that I can 'rest off' within a few hours and, provided I've stopped exertion early enough, no PEM follows so this feels like potentially a different mechanism to PEM itself
b) what I call early PEM, i.e. minor symptom increases 4-6 hours post-exertion, these follow a distinct pattern and subside again after a few hours but are always followed by PEM the next day so I view this as part of the core PEM mechanism
c) what I call main PEM, i.e. the classic PEM with a delayed peak, this also follows a distinct pattern though severity and duration of symptoms depend on level of overexertion, eventually there is a return to my usual level of function
d) what I call permanent deterioration or loss of function, this follows an episode of severe PEM and implies what it says on the tin, i.e. I regain some but not all of my pre-PEM function
e) what I call rolling PEM, i.e. when after one overexertion you don't wait until returned to pre-PEM function before overexerting again, basically PEM on top of PEM leading to a downhill slide in function
f) what I call subclinical or cumulative PEM, that's when you get within a hair's breadth of triggering PEM and you think you got away with it, but do this 3 days in a row and the cumulative exertion ends up triggering PEM [the difference between a) and f) is that in a) there's immediate symptom exacerbation but in f) there's none until PEM strikes]
I also have a sneaky feeling that different types of exertion have different effects but that's difficult to confirm because few exertions are purely of one type.
I know physical exertion alone can lead to all of the types of symptom exacerbation above.
Orthostatic exertion alone can, I think, do all that, too, except possibly d), unsure on that one.
I'm not sure about cognitive or emotional exertion or sensory overload alone. Each can definitely lead to a bad case of a) and do so very quickly. I speculate that this quick brain shutdown actually protects me from PEM triggered purely by brain exertion. Of course most of the time it's not pure brain exertion but a mix of that and of orthostatic and/or physical exertion, and PEM is always on the cards then.
DigitalDrifter
Senior Member (Voting Rights)
I would call that lowering your PEM Threshold Lowering Threshold (PTLT), as well as lowering your PEM threshold. See: https://www.s4me.info/threads/ptlt-pem-threshold-lowering-threshold.20901/