Should Physical exertion and Mental exertion be separated for PEM?

[Mij]

Well the brain does tell our muscles what to do

 

[peggy-sue]

And the muscles tell the brain what is going on. Brain and body are one.
I'm fast coming to the conclusion that any attempt to "distinguish" between mental and physical will only serve dualism.

It would be as silly as studying the left leg and the right leg seperately.

 

[soxfan]

For me I have PEM with mental exertion which can include any of the following....work...family gatherings...social interaction...shopping (where I am looking for products). It usually starts during the activity and even after I have come home from the certain activity it doesn't let up and I usually have to lie down to rest my brain.

I have never had a problem with physical activity in the 8 years I have been ill. I am not sure why but I can do almost anything physically that I want to do unless I am just too tired to begin with...

That is why I think they should be seperate...only because I have never understood why the mental exertion is the cause of my PEM....

 

[floydguy]

From the comments so far PEM sounds like unwellness. For PEM to be recognized and respected the definition must be tightened with a simple test to prove whether it's present and whether it is only specific to CFS. Otherwise it will end up like "fatigue" which as we have seen can be manipulated and apply to anyone not feeling well. In the meantime, tests such as PET, QEEG, Spect, NKC function, cardio-pulmonary stress tests and methylation pathways should be analyzed as a screen for ME research purposes.

 

[peggy-sue]

That doesn't sound like PEM which is POST-exertional malaise.
It happens the next day, when you've not been ill for too long - but the longer you've been ill, the longer it takes to appear - and the longer it lasts.

It's not the pains you get while doing things - and if you don't have any trouble with physical activity, it doesn't sound like ME. I haven't a clue what else it might be, though.

PEM is not "unwellness" - it's an exacerbation of all symptoms, a serious downturn in functional capacity.

 

[justy]

We have had many discussions like this before - what is PEM? how do you define it etc?
I am so far with the mito theory, which ties mental and physical together. The brain eyes and heart have highest need for ATP. the heart will take priority then the brain. Brian cant recycle ATP like in other parts of the body, so its often the first organ to give way when we are using up energy, likewise with the eyes, a lot of PWME have terrible eye problems.

Moving on to PEM - i dont think it has to be entirely delayed - just post exertional, so it can be striaght away or hours later - up to about 3 days which is the amount of time it takes for normal finction of ATP to be restored if youre not recycling properly. I'm also certain that PEM is NOT specific to M.E. Patients with Lupus and Sarcoidosis have similar problems if they go out of their energy envelope it can make all their symptoms worse, causing flare ups hours to days later.

Their are of course patients who are anomolies. One who i spoke to who was bedbound, but could work away all day on a computer, whilst i was not bedbound but had to limit ALL activity, including mental to 5 minutes at a time with resting in between. It wasnt the severity of our illness that was the issue. I think it turned out that they had POTS, which i dont have and i have often wondered about the differences between PWME with obvious severe POTS and those without.

All the best, Justy

 

[Calathea]

I find that I get both mental and physical PEM from both mental and physical stressors, but they tend to be more tied to the type of stressor. So PEM from mental exertion will have a heavier focus on the cognitive symptoms and feeling wired, probably with eyestrain. It also seems to hit me immediately after the exertion, once I've reached a tipping point, whereas after physical exertion, the main jolt often doesn't hit me until the next day or even the day after that.

Put another way, they go like this:

Mental exertion - can probably keep going for longer than with physical exertion, then will hit a tipping point and suddenly feel wired, brain foggy, probably eyestrain, generally fatigued. Mostly gone by next day, though may feel generally wiped out, and perhaps emotional if it was something emotionally stressful as well.

Physical exertion - shorter activity time, may feel bouncy from emergency energy, will gradually wind down if I stayed within my limits or crash physically if I didn't, main crash will be a day or so later, fatigue and achy muscles in particular, though brain a bit fried as well. Same thing about emotional stress applies here too, I'm more likely to burst into tears the day after overdoing it.

 

[L'engle]

I get what feels like an 'altitude sickness headache' in the back of my head and neck, and my brain feels dehydrated, tight, constricted, painful. This is from either mental or physical activity. The blood vessels in the back of my head hurt as though they are straining to pull oxygen and blood into my brain. Only long lying down rest without stimulus makes it go away.

 

[SOC]

I think perhaps any confusion or concern arises because as a diagnostic symptom (something you have to have in order to get a diagnosis), PEM relates to any exertion response.

What I think Levi and certainly me were wondering is if this symptom can/should be researched as a collective entity or sub-divided perhaps into looking at 'mental' and 'physical' responses/abnormalities.

Does that make more/less/no sense?

I think it would be interesting to look at 'mental' or 'physical' responses separately. It might tell us something about the nature of illness, or where mitochondrial dysfunction is worst, if we knew why or when our body responds with mental or physical exhaustion.

I don't think that there is a direction connection: mental exertion --> mental exhaustion and physical exertion --> physical exhaustion connection, though.

 

[soxfan]

I have read many times that you can have PEM immediately after activity whether it is mental or physical. For some reason mental exertion is what wipes me out...as with emotional exertion. If I have a bad morning emotionally I am done for the day.
I am not saying I can go out and run marathons but I don't seem to have the same degree of physical exertion problems that others have..I know some people with CFS are able to work full time where that would be impossible for me. My brain would not be able to handle all that stimulus. I have been sick for 8 years and the mental exertion has always been a huge problem for me. Some days it will take me 2 days to recover from a 5 hour shift at work...I believe that qualifies as PEM...

 

[L'engle]

I have read many times that you can have PEM immediately after activity whether it is mental or physical. For some reason mental exertion is what wipes me out...as with emotional exertion. If I have a bad morning emotionally I am done for the day.
I am not saying I can go out and run marathons but I don't seem to have the same degree of physical exertion problems that others have..I know some people with CFS are able to work full time where that would be impossible for me. My brain would not be able to handle all that stimulus. I have been sick for 8 years and the mental exertion has always been a huge problem for me. Some days it will take me 2 days to recover from a 5 hour shift at work...I believe that qualifies as PEM...

I think It is the same PEM. A person shouldn't have to have two sets of symptoms in order for one set to 'count'. There appears to be a subset of those with ME who have only fatigue after mental exertion. If it stops you from working full time the way a healthy person does, that is debilitating! As well, it differs from mental illness in that you do have a physical sensation of exhaustion from mental activity. Mental illness is real too, but I think there needs to be a distinction between PEM from mental exertion and exhaustion caused by mental illness.

 

[soxfan]

It definitely keeps me from working even part time. I am able to work 3 days a week tops..and they can't be in a row so I will have time to recover. Any situation where I have to interact is very exhausting for me. When I become mentally drained it does turn to physical exhaustion like my body has been drained of life. I am not even close to having a normal life because of this.

 

[L'engle]

It definitely keeps me from working even part time. I am able to work 3 days a week tops..and they can't be in a row so I will have time to recover. Any situation where I have to interact is very exhausting for me. When I become mentally drained it does turn to physical exhaustion like my body has been drained of life. I am not even close to having a normal life because of this.

I was like this for the first nine years of my illness, with only minor compromise in exercise ability but major compromise in other categories. I did not take my illness seriously enough because I was only mildly physically disabled. Overdoing it mentally and physically caused a worsening of both, where I now can't deny that the two are a physical illness. The mental PEM is too easily overlooked, and we are in danger of making life worse overall. It is too often seen as a 'minor' symptom, when it really prevents people from functioning. I was never able to work full time or even one full length day at a time without being horrendously ill for a large part of it. Yet even people who know me well think of me as having been only 'mildly ill' for those years. I was sick and in pain every darn day!

 

[alex3619]

Hi L'engle, I was in daily severe pain for fifteen years as a result of constantly pushing past my physical limits, operating in constant physical PEM - one of the reasons I went from mild to severe. How was I to treat this? Exercise. Of course I got worse not better. The thing is people can't see the pain, can't see the suffering. In the absence of clear evidence they will tend to think the issues are minimal. This is a form of society wide denial. Its how we can ignore child abuse. Its how we can ignore sexual abuse. Its how we can ignore the homeless, or the mentall ill. We don't look, we don't want to look, because that might make it our problem. Those with chronic illnesses like ours tend to learn to see past this and look at the problem - most don't.

Bye, Alex

 

[soxfan]

I definately can do less as the years go on. When I first became sick I was able to keep up my work schedule but as time went on I had to keep cutting back my hours. I even took some time off at one point. I look perfectly healthy at work which is why it is so hard to explain to co workers why I can't work nights or longer shifts. I think even my boss doesn't totally get it because I always show up for my shifts even though at times I feel on the verge of collapse.

Luckily I have only some pain issues but I am able to cope with those pretty well. It is mostly the chronic tiredness and mental overstimulation that are my worse problems. When I do get mentally overstimulated I have to lay in a quiet room and not move for hours....it is truly one of the worse feelings I have ever encountered with this illness.

 

[justy]

I find that I get both mental and physical PEM from both mental and physical stressors, but they tend to be more tied to the type of stressor. So PEM from mental exertion will have a heavier focus on the cognitive symptoms and feeling wired, probably with eyestrain. It also seems to hit me immediately after the exertion, once I've reached a tipping point, whereas after physical exertion, the main jolt often doesn't hit me until the next day or even the day after that.

Put another way, they go like this:

Mental exertion - can probably keep going for longer than with physical exertion, then will hit a tipping point and suddenly feel wired, brain foggy, probably eyestrain, generally fatigued. Mostly gone by next day, though may feel generally wiped out, and perhaps emotional if it was something emotionally stressful as well.

Physical exertion - shorter activity time, may feel bouncy from emergency energy, will gradually wind down if I stayed within my limits or crash physically if I didn't, main crash will be a day or so later, fatigue and achy muscles in particular, though brain a bit fried as well. Same thing about emotional stress applies here too, I'm more likely to burst into tears the day after overdoing it.

You have described what happens to me exactly here.
Just wanted to let you know...
Justy x

 

[peggy-sue]

I'm more the opposite - I'm far better physically than mentally.

I have to get Michael to explain what's going on in CSI to me.

 

[floydguy]

That doesn't sound like PEM which is POST-exertional malaise.
It happens the next day, when you've not been ill for too long - but the longer you've been ill, the longer it takes to appear - and the longer it lasts.

It's not the pains you get while doing things - and if you don't have any trouble with physical activity, it doesn't sound like ME. I haven't a clue what else it might be, though.

PEM is not "unwellness" - it's an exacerbation of all symptoms, a serious downturn in functional capacity.

Several points:

- My "objective" cognitive "PEM" testing comes from extensive neuro-psych evaluations at Harvard Medical School (in studies concerning brain fog associated with Lyme Disease)
- My "objective" physical "PEM" testing comes from Cardio Pulmonary testing at the Miami VA and exercise testing in Ithaca NY
- I have also just completed specialized ANS testing at Beth Israel Deaconess in Boston
- I am taking it that you don't approve of PEM being associated with cognitive dysfunction: "and if you don't have any trouble with physical activity...."
- So far all tests are very abnormal; particularly in regards to blood flow, volume and breathing

How was your "PEM" tested?

Unless PEM is objectively defined and measured, everything related to it will be associated with stress or deconditioning. IMO PEM should be associated with something along the lines of ANS dysfunction which at least in my case in a major issue.

 

[soxfan]

Calathea..you described both mental and physical PEM exactly what it feels like to me..

 

[peggy-sue]

Floydguy - you've got me com pletely wrong, probably my fault - foggy and not explaining things properly!
But I really really don't get where you get this notion!
"- I am taking it that you don't approve of PEM being associated with cognitive dysfunction:- I am taking it that you don't approve of PEM being associated with cognitive dysfunction: "and if you don't have any trouble with physical activity...."

I have a great deal of trouble with physical activity. I can only shower every 5 days, we had to get a downstairs loo put in so I don't have to go upstairs more than once a day, I'm pretty much housebound.

However, comparing my physical and mental capabilities, my physical capability is vastly superior to my mental - within the disease.

And I suffer from severe mental/cognitive PEM as well as physical.

I haven't been tested for anything, beyond the initial few bloods which show nothing. That's all that happens here.
My "evidence" comes from my and my partner's practical experience of living with this, day-to day.

My comment "and if you don't have any trouble with physical activity...." was addressed to Soxfan, who said:
"I have never had a problem with physical activity in the 8 years I have been ill. I am not sure why but I can do almost anything physically that I want to do unless I am just too tired to begin with..."