Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

In another thread I said this:

It's too bad our symptoms are so hard to clearly define. Otherwise we could build a database of specific symptoms and responses to factors, and treatments that worked for each combination, or factors that needed to be avoided. In my 20+ years of ME, I've stumbled across several treatments that worked really well for me, but haven't worked for anyone else. Is there some pattern in factors that might indicate who else it might work well for?

 

A long Phoenix Rising thread about this. From what I recall, only a few found some relief, but it was more than one person at least:

Cumin (Cuminum cyminum): Possible PEM Blocker

 

There are a few people who have reported mild benefits from cumin; nothing like the 100% blocking of PEM that it gave me. There are threads about it on Phoenix Rising if you want more detail. Amazing wonderful treatment for me, but why, and why not for others? Another wonderful treatment for me was T2 (3-5 diiodothyronine), but again, just for me. For most treatments for ME, it seems that there one or a few individuals it works really well for, some that it has a negative effect on, and the majority it has no noticeable effect on. Then there's the problem of "works well the first few times, then stops working and never works again" that happens all too often.

I think there were more "I can't stand the taste of cumin" responses than ones that reported a benefit. I don't love the taste, but I don't mind it either, and for the benefits, I'd have taken it even if it tasted awful.

 

I get puffy face in PEM, also lie down more in PEM

 

Made a thread to move the discussion to:
Painkiller effectiveness for people with ME/CFS

 

Perhaps start a poll on 'puffy face' too. It's interesting to me that some get this.

 

Might be better for someone who experiences that symptom to word the question to do it justice.

 

I just wrote a forum post and I'm sweating and feeling like I've done something physical.

 

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.

 

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.

 

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.

 

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.

 

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.

 

My PEM from driving was much worse in bad driving conditions. Maybe my muscles were more tense, but I think it's more likely that the cognitive exertion and/or emotional stress was the cause. Driving at night, in a snowstorm, on icy roads, was worst.

 

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.

 

@Trish has basically written my submission for me!

The only differences are that my response to physical exertion isn't as severe (I need to rest but not be in bed), and I've never had a migraine.

 

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.

 

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.

 

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.