• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What are your PEM/Crash triggers? - Poll

What are your PEM/Crash triggers?

  • Physical Exertion (No matter how small)

    Votes: 100 80.6%
  • Social/Conversational Engagement

    Votes: 91 73.4%
  • Mental Exertion (studying/reading/concentrating)

    Votes: 87 70.2%
  • Sunlight/Heat

    Votes: 54 43.5%
  • Other Stiumuli

    Votes: 49 39.5%
  • Specific Muscle Group Exertion

    Votes: 31 25.0%

  • Total voters
    124

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Social engagement is mental concentration for me. I have to concentrate to follow what other people say, what it means, then what my response is/should be, and then try to find the words to express myself. Also I find that I am very easily distracted if there is other noise/activity taking place nearby, so I might need to concentrate to filter that out as well.
Social engagement also usually means leaving your home and going somewhere else. That in turn means cleaning up and dressing and fixing your hair. This adds physical exertion to the mental exertion.

Laying in bed and talking on the phone does not give me PEM.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
Social engagement also usually means leaving your home and going somewhere else. That in turn means cleaning up and dressing and fixing your hair. This adds physical exertion to the mental exertion.

Laying in bed and talking on the phone does not give me PEM.

For me, I will get PEM from phone conversations, but it takes longer than face-to-face conversations. I am not sure of the exact amounts, but around 30 minutes of face-to-face = 2 day PEM. Whereas on the phone... its closer to an hour... but its still the same result. I've heard many others here get it from Instant messaging... I havent done that for such a while, so I don't know if I'd fall into that category.

But there is no question that preparing for an engagement adds to it.... for me... preparing for almost anything seems to cause crashing... even if it doesnt involve much physical exertion.
 

meandthecat

Senior Member
Messages
206
Location
West country UK
Sometimes when trying to see or focus on something close to me and forcing my eyes to look to one side will instantly bring on symptoms of disorientation, nausea and brain fog, backing off straight away and going horizontal till it passes is essential if it is not to turn into a much greater 'crash'. It is similar to aerobic exercise but so fast, at least with exercise I have a chance to stop before I go too far.
Another thing is trying to hold too many different things in my mind at once or paying attention to two or more things, conversations etc.

I used to ride a motorcycle and practiced a 360 awareness, holding a mental picture of what was around me as I went. I felt so alive, so in the moment, right on the edge and stayed alive.

It's good to know your limits, I won't be doing that again.
 

purrsian

Senior Member
Messages
344
I now have a shopping trolley and put my handbag in it. Wish I had bought one years ago. I still have to pull it along but it's still much better than carrying something. I really feel it when I am hanging washing out on the line. Putting the arms up above the head and looking up - pretty much an instant affect on the ME.
Be sure to keep an eye on your handbag so no one takes it - I always want to put it down in the trolley, but I'm always so paranoid about it being stolen so I just deal with the effort of lugging it around lol

I also have the arms above the head problem, so I dry my hair in several periods instead of all at once and with my laundry, I use a small indoor stand instead of our outdoor line so I don't need to reach up. For sheets or blankets, I spread them out using the backs of chairs to hold them up, usually only need two chairs but sometimes need four. It's SO much easier than trying to throw it over a line.

For me, I will get PEM from phone conversations, but it takes longer than face-to-face conversations. I am not sure of the exact amounts, but around 30 minutes of face-to-face = 2 day PEM. Whereas on the phone... its closer to an hour... but its still the same result. I've heard many others here get it from Instant messaging... I havent done that for such a while, so I don't know if I'd fall into that category.
But there is no question that preparing for an engagement adds to it.... for me... preparing for almost anything seems to cause crashing... even if it doesnt involve much physical exertion.
I get PEM from phone calls too, even though I'm laying down the whole time. I've always found phone calls to be draining though and it's just worse with ME.

Loud Noise is a big trigger for me.
Definitely affects me too, although I don't think it's necessarily a trigger. I can listen to loud movies or music if I feel ok, but if I'm tired it just makes me even more exhausted and it's hard to handle.

Living in QLD Aus, the sunlight/heat is definitely an issue for me, although humidity is probably worse. Thankfully, I spend most of my time in air con so I can avoid having issues too often. I would also add that emotions affect my fatigue - including being around people in emotional states. If my mum is on her soap box about something, it just saps me so much even though none of it is directed at me. Same as being around someone who is rushed, overexcited, etc.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
Be sure to keep an eye on your handbag so no one takes it - I always want to put it down in the trolley, but I'm always so paranoid about it being stolen so I just deal with the effort of lugging it around lol
Yes, I can't give it up. I've always been too relaxed about my handbag in the supermarket shopping trolley. I'm often stopped by shoppers warning me to watch my handbag. It's hard enough getting groceries and having to carry a handbag around when I could be off-loading it into the trolley.

For extra safety I use the child restraint straps on the shopping trolley and feed it through my handbag handles and then stick the Velcro straps together so that it makes it harder for a bag snatcher to grab quickly.
 

purrsian

Senior Member
Messages
344
Yes, I can't give it up. I've always been too relaxed about my handbag in the supermarket shopping trolley. I'm often stopped by shoppers warning me to watch my handbag. It's hard enough getting groceries and having to carry a handbag around when I could be off-loading it into the trolley.

For extra safety I use the child restraint straps on the shopping trolley and feed it through my handbag handles and then stick the Velcro straps together so that it makes it harder for a bag snatcher to grab quickly.
Perhaps you could keep your phone, cash and/or cards in a pocket or bra. The straps will definitely help, but at least then you've still got the valuables on you. My partner was a cop, so he's always telling me stories lol but even before him, I remember one time I fainted at the hospital visiting a friend and somehow, didn't drop my purse. It was literally the last thing I thought about before I lost consciousness "don't drop your purse in case the friend and nurses helping don't notice".
 

rosie26

Senior Member
Messages
2,446
Location
NZ
Perhaps you could keep your phone, cash and/or cards in a pocket or bra. The straps will definitely help, but at least then you've still got the valuables on you. My partner was a cop, so he's always telling me stories lol but even before him, I remember one time I fainted at the hospital visiting a friend and somehow, didn't drop my purse. It was literally the last thing I thought about before I lost consciousness "don't drop your purse in case the friend and nurses helping don't notice".
I've heard stories like yours, tight grip on something. :p I should buy a small pouch purse with long straps to drape over my shoulder in a sash fashion.
 
Messages
93
Location
UK
That is cool that specifically social engagement is very commonly a trigger. In the future, I would be very interested to find out answers for why this is!

Could it be to do with the fact that there seems to be an overlap between CFS and autism? I would certainly consider myself to have lots of the traits of high functioning aspergers, and the more ill I get the more these traits are amplified, also vice versa when I feel more well. From the general tone of this place I would go as far as to say that higher than average intelligence is a common feature? Which is also a crossover.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
Could it be to do with the fact that there seems to be an overlap between CFS and autism? I would certainly consider myself to have lots of the traits of high functioning aspergers, and the more ill I get the more these traits are amplified, also vice versa when I feel more well. From the general tone of this place I would go as far as to say that higher than average intelligence is a common feature? Which is also a crossover.

I don't think so. Social engagement has become my most significant trigger... but I don't have any symptoms of autism.... other than I'm not very touchy-feely. Social engagement is a very satisfying and exciting experience at times... . but unfortunately, the more I enjoy having face-to-face conversations...... the more likely I'll suffer Pem the next day... its an incredibly cruel relationship. I have to learn to 'not enjoy' conversing.
 
Messages
40
Hey guys, just to pick up on this- I was diagnosed a few months ago with aspergers and not a single person in my life ever suggested it to me, in fact most people outright dismissed the idea because I'm so sociable. You can have Aspergers and be sociable and extrovert, it's more that it will exhaust you and you'll want a lot of alone time/downtime/quiet time with people who won't talk to you due to sensory overload/hypersensitivities. And yeah I make eye contact fine- even if itstresses me out to do so. So just to say, some people may not want to dismiss the idea of a possible autism connection- it took me 5 years of suspicians before I finally realised, oh yeah that's me LOL.
 

Wishful

Senior Member
Messages
5,665
Location
Alberta
Coming to the discussion late, but I do have something to add. The 'no matter how small' part of the physical exertion option is too limiting. I can walk or ride for several hours without triggering PEM, but a couple of minutes of using the wrong muscles more than they are used to will trigger it. Several members mentioned that they are more sensitive to arm activities, particularly with arms held overhead. I think that it's due to muscles being stressed beyond what they're used to. Most of us use our legs much more than we hold our arms overhead. Using muscles beyond their conditioned limits causes muscle tearing, which causes inflammation (even if it's unnoticeable), which triggers our neuroimmune system and causes the symptoms associated with the flu.

For rosie26, I would guess that squatting is something you don't do regularly, and thus it causes those muscle tears. I think that many of us would experience the same thing if we tried squatting for hours.

I have no good thoughts on why socialization or other mental activities trigger the symptoms. My wild guess is that it depletes some chemical or builds up a waste chemical, which unbalances our cells.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
Coming to the discussion late, but I do have something to add. The 'no matter how small' part of the physical exertion option is too limiting. I can walk or ride for several hours without triggering PEM, but a couple of minutes of using the wrong muscles more than they are used to will trigger it. Several members mentioned that they are more sensitive to arm activities, particularly with arms held overhead. I think that it's due to muscles being stressed beyond what they're used to. Most of us use our legs much more than we hold our arms overhead. Using muscles beyond their conditioned limits causes muscle tearing, which causes inflammation (even if it's unnoticeable), which triggers our neuroimmune system and causes the symptoms associated with the flu.

For rosie26, I would guess that squatting is something you don't do regularly, and thus it causes those muscle tears. I think that many of us would experience the same thing if we tried squatting for hours.

I have no good thoughts on why socialization or other mental activities trigger the symptoms. My wild guess is that it depletes some chemical or builds up a waste chemical, which unbalances our cells.

That's an interesting point about muscle tearing/stress. When you use the wrong muscles, does this cause the delay before PEM to be the typical duration? or is it longer? or shorter?
 

Cinders66

Senior Member
Messages
494
It's mainly a matter of severity. I started off mild to moderate and so it was mainly physical exertion that floored me as I tried to do normal life activities, then the cognitive became more pronounced as I deteriorated. Then, when I became severe the cognitive became very distressing and social interaction and other sensory stimuli that I could previously tolerate became overwhelming and harmful too. When the illness has become very debilitating then anything is too much for the body/brain, whereas those mildly affected ( still at work etc) are much more able to tolerate light and human interaction etc except when they're in a crash but climbing stairs/lifting things and long hours etc will be the things taking toll.
 
Last edited:

jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
I only experience physical exertion induced PEM, not cognitive nor emotional.

I will also experience PEM if I use my arms - it doesn't even have to be heavy stuff, which would obviously cause PEM due to effort to lift / carry - but also reaching above my head for multiple items off a shelf will cause almost immediate malaise.

Though, I'm not sure if that's because there is extra exertion to push blood up my arms or if there is something wrong with my actual arm muscles.
I feel the same thing
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
It's mainly a matter of severity. I started off mild to moderate and so it was mainly physical exertion that floored me as I tried to do normal life activities, then the cognitive became more pronounced as I deteriorated. Then, when I became severe the cognitive became very distressing and social interaction and other sensory stimuli that I could previously tolerate became overwhelming and harmful too. When the illness has become very debilitating then anything is too much for the body/brain, whereas those mildly affected ( still at work etc) are much more able to tolerate light and human interaction etc except when they're in a crash but climbing stairs/lifting things and long hours etc will be the things taking toll.

I've noticed the same pattern. As of now... I notice that social interaction outside of my immediate family... of almost any duration causes pem. This was definitely not the case a few years ago.
 

Wishful

Senior Member
Messages
5,665
Location
Alberta
That's an interesting point about muscle tearing/stress. When you use the wrong muscles, does this cause the delay before PEM to be the typical duration? or is it longer? or shorter?
I haven't paid much attention to PEM duration. I'd have to go back through my records to look for that. I think that more severe exertion (of rarely-used muscles) leads to more severe symptoms (24 hrs later) and longer duration, but that might be due to longer time for muscles to be fully repaired.

Lifting stuff over my head, even if it's not heavy stuff, certainly results in quick and painful fatigue of the normal sort. I think it's just a matter of those muscles--and arteries--not being conditioned for doing that. I'd like to tone up those 'lesser used' muscles, but it's a matter of figuring out how to do that without triggering PEM. Okay, and figuring out how to motivate myself to make the effort while suffering from mental lethargy.
 

Wishful

Senior Member
Messages
5,665
Location
Alberta
Does anyone else find that driving is a trigger? I typically only drive every three weeks or so (half an hour to town, then back), so it doesn't count as something I'm conditioned to. I don't know if it's the sustained level of alertness required, or holding my arms up on the steering wheel, or the minor social interaction in town, but I'm generally feeling lousy (PEM) sometime the next day.
 

Jessie 107

Senior Member
Messages
291
Location
Brighton
I find anything physical, even light shopping brings on PEM, I have also noticed recently my arm muscles have become very weak, even holding the hairdryer whilst drying my hair is getting harder. Yes I even noticed how heavy I thought my mug of coffee was!
I would like to exercise my arm muscles but just don't want to bring on my symptoms, I've already done that this week.
 

PhoenixDown

Senior Member
Messages
455
Location
UK
I don't get PEM but instead I get PEI (post exertional injury). It's so severe that I'm 100% bed bound. After over exertion of a muscle or joint not only do I suffer more pain easier but the threshold for further injury is lowered. It's a vicious cycle that spiraled out of control.

Although I have problems with memory and concentration (that are exacerbated by sleep loss/poor sleep) I don't suffer from doing too much.