I get puffy face in PEM, also lie down more in PEM
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Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?
- Thread starter Trish
- Start date
Do you get Puffy Face?
Perhaps it’s worth asking about the other face changes mentioned too - someone said something about sunken eyes and pale skin.
Jonathan Edwards
Senior Member (Voting Rights)
I have no doubt that fatigue after car travel is due to continuous muscle contractions - if the trip is long enough I specifically have neck ache and the neck muscles are going to be working the hardest unless you have an aeroplane pillow.
But that is something quite other than the sleepiness induced by vibration. I don't see why the vibration should make your muscles work hard because the return of the oscillation is far to quick for there to be any need to compensate. On the other hand every time you turn the steering wheel a little your neck is going to need to adjust to the slight slow shift in acceleration.
As for bumpy ambulances for people lying down, I suspect it is just uncomfortable. There is no need to adjust postural muscles on a bed.
Jonathan Edwards
Senior Member (Voting Rights)
Clearly muscle isn't exposed to light but yes we have detailed studies of muscle changes for 48 hrs after exercise. The UCL muscle unit did biopsies after exercise. But there is a very stereotyped resolution time frame. PEM doesn't do that I am told. And of course on 2 day CPET normal people do not lose power.
I agree that it is possible that some normal response to exercise in muscle over 48 hrs goes wrong in MECFS but I cannot relate it to the idea that a ride in an ambulance might make someone worse for weeks or even permanently. If that is true we need a completely different sort of mechanism, although it could still feed off the normal muscle response at times. It wouldn't apply to worsening after mental exertion.
Sasha
Senior Member (Voting Rights)
I don't know about postural muscles but I don't recall whether I was able to relax fully while being jolted about. I would expect that I would have been holding my body in some tension so as not to be bounced and jolted like a rag doll. It's not a very cushioning mattress.
I had a 10 minute ambulance ride recently. Every bump made me tense to hold my body in place. If I'd had to endure several hours I'm sure it would have induced severe muscle pain and PEM.
Car journeys are a very difficult too, apart from motion sickness, there's also a lot of muscle tensing with the movement. The vibration doesn't make me sleepy, OI from sitting up in the car is also problematic. I had to give up driving over 10 years ago partly because I felt my reaction times had slowed to an unsafe level, and partly because I couldn't rely on being able to sit up and have the strength to control the vehicle.
I find being pushed in a wheelchair also very problematic if there's any bumpiness, again because of tensing muscles to hold me upright.
Basically any mode of transport can induce PEM for me.
Perhaps imagine being hungover, jet lagged and having the flu or a migraine, and going on the dodge-ems, but the dodge-ems are a on fast-forward and the music is loud and obnoxious.
AliceLily
Senior Member (Voting Rights)
I wish I could show a photo of me taken with my mother and brother 2 years after my very severe ME onset. My mother and brother had healthy tanned beaming faces and my face was pale, my eyes had the ME look. I've seen that same look on other ME's. It's quite shocking for me look at that photo. Twenty years on the ME look is not as notable but I think it is still there.
AliceLily
Senior Member (Voting Rights)
Cognitive and emotional exertions (goes both ways, input from environment and my efforts) will make me nauseous, more sensitive to light and sound, irritable, great need to lie down and away from any noise, insomnia will worsen, wired and tired, poisoned feeling.
I can't take a lot of other peoples emotions. It upsets me easily and I can get very crotchety. So I have to limit how much I take in and I have to hold off empathizing too much with others. I can empathize for a bit and then I need to protect myself from all the emotional exertion. I limit how much emotional stuff I watch on T.V. news stories etc.
I also cannot allow myself to be upset (crying) for long. It will just flare up my head symptoms, headache.
I really would like to understand the cognitive side more, to me if feels more than brain fog. Brain fog to me just sounds so trivial.
I can't take a lot of other peoples emotions. It upsets me easily and I can get very crotchety. So I have to limit how much I take in and I have to hold off empathizing too much with others. I can empathize for a bit and then I need to protect myself from all the emotional exertion. I limit how much emotional stuff I watch on T.V. news stories etc.
I also cannot allow myself to be upset (crying) for long. It will just flare up my head symptoms, headache.
I really would like to understand the cognitive side more, to me if feels more than brain fog. Brain fog to me just sounds so trivial.
Kitty
Senior Member (Voting Rights)
There might not be any need to, but it doesn't stop it happening. It's the same reason travelling as a passenger in a car can be as tiring as driving it, because not only is there the awful dizziness and nausea, you can't anticipate the vehicle's movements in the same way when you're not controlling it. The tension from a combination of stress, feeling really ill, and positional uncertainty is automatic and it's hard to avoid it. I've tried, but I can't.
I dread the idea of needing to travel any distance in an ambulance without sedation at least, and I'm only moderately ill. It doesn't quite equate to crossing the Irish Sea on a ferry (I want to be in a cremation urn for that please), but the after effects could be equally long lasting.
AliceLily
Senior Member (Voting Rights)
One of my first bad bouts of PEM in my earlier years when I didn't know I had ME was from a long 5 hour return car trip. I remember when we got home to my brother's house I sat down in the lounge and told him and everyone that I feel really ill. It was all going to get so much worse years later.
AliceLily
Senior Member (Voting Rights)
When I first came to the forums I use to wake up in the mornings hoping no one had quoted any of my posts and even today I still feel a sense of relief when I can post freely and not worry about having to reply to one of my posts being quoted. If I do get quoted, often I can only do a like in response.
Purely subjectively, but it feels as if driving with bumps in the road increases neuroinflammatory type responses. I wonder if this could be VanElzakker's hair-trigger microglia. Yesterday I drove 40 km to pick up medication and yesterday evening was headache-y, with noise hypersensitivity developing by late evening. However, I slept OK and am having a quiet mid Spring day, during planned leave from work. (Work for me is half-time, 10 steps down the hallway in my home office.)
Perhaps things like this may appear to be PEM but aren't, or are in some ways distinct, instead related to specific aspects of the overall mechanisms.
I remember when more severe and being driven to hospital my wife had to inch over pedestrian crossing speed bumps. As weak as I was I still lifted myself up from the seat so that the impact didn't propagate up my spine. Even now, many nights reading in bed before sleep with head/pillow against the headboard, I still have to flex my head forward if my wife sits forward and then back against the headboard to avoid the modest jarring of my head. I expect this is what post-concussion might be like. It's such a trivial thing that I absolutely would not even have registered/noticed/cared about before becoming ill.
It's awful to think of very severe people transported to or in hospital being subjected to much worse, with not only often very limited accomodation, but frequently deliberate stimulus challenge.
Perhaps things like this may appear to be PEM but aren't, or are in some ways distinct, instead related to specific aspects of the overall mechanisms.
I remember when more severe and being driven to hospital my wife had to inch over pedestrian crossing speed bumps. As weak as I was I still lifted myself up from the seat so that the impact didn't propagate up my spine. Even now, many nights reading in bed before sleep with head/pillow against the headboard, I still have to flex my head forward if my wife sits forward and then back against the headboard to avoid the modest jarring of my head. I expect this is what post-concussion might be like. It's such a trivial thing that I absolutely would not even have registered/noticed/cared about before becoming ill.
It's awful to think of very severe people transported to or in hospital being subjected to much worse, with not only often very limited accomodation, but frequently deliberate stimulus challenge.
Kitty
Senior Member (Voting Rights)
I drive both my car and my wheelchair like that. Lean forward to create a space behind my back and the seat whenever there's a bump coming up, because it's...really unpleasant in a way I can't describe. I'd no idea I was even doing it until somebody pointed it out, it was just automatic.
It's uncomfortable enough to be worth the energy costs of spending most of the time without any back support when I have to wheel on pavements. I limit it to short distances, but every now and again I can't avoid having to go a few hundred metres.
Yep. Even trying to imagine it is overwhelming.