Delayed post-exertional malaise (PEM): can it be caused by mental over-exertion alone?

[FrankDI]

Delayed post-exertional malaise (PEM): can it be caused by mental over-exertion alone?

I’m sure this question is a common one!

I’m trying to improve my understanding of PEM from mental and/or physical activity, as I’m currently really struggling, despite having suffered with ME for 20 years! I’m looking to learn from the experiences of others who have experienced severe ME symptoms.

Up until last year I have had a relapsing/remitting form of ME. I was working full-time until October 2014 having been free of severe ME symptoms for 3 years.

I had a very bad relapse in October 2014. I have been having problems establishing a safe baseline of activity over the last 3 months. I have deteriorated over that time overall to a level of functioning far below anything previously experienced, and am attempting to establish what, if anything, might be preventing me from stabilising my condition. I believe I am a 1-2 on the Activity Scale currently.

My ME is primarily neurological – the worst symptoms being crippling nausea, strange “inside head” symptoms (buzzing swarm of bees type feeling in head), tinnitus, bad brain fog, poisoned feeling, temperature dysregulation, bad night sweats, cold feet, muscle tremor and obviously fatigue/exhaustion. Muscle symptoms are bad but bearable – pain and weakness.

At present I am experiencing a cyclical pattern, whereby I get a sequence of 3-4 OK days (where OK means I can get up, get dressed, go to the loo, make a cup of tea, read, watch DVD/TV, maybe have a wash/shower) followed by 3-4 very bad days when I struggle to function. One cycle follows another repeatedly.

On the OK days I have probably previously over-exerted myself physically by doing physical activity beyond my current capability e.g. tiny bit of household cleaning, having a shower and/or cooking a simple meal. On the bad days I am able to make it to the sofa and watch a bit of TV and spend some time on the laptop, but do no other physical activity.

I am able to spend significant time on the laptop or watch TV, even on bad days. I don’t get any immediate increased symptoms, though sometimes it’s difficult to concentrate for a long period. But maybe this is causing me more harm than I am aware of, and contributing to my lack of stability.

If you don’t get PEM straight away, what are the signs of overexertion?
Have others had experience of delayed PEM as a result of mental activity?
Can it be possible that something can be done comfortably that is in reality very harmful?
Do you get the same symptoms from overdoing it physically and mentally or are the symptoms noticeably different?
What helps?

Thanks very much for any guidance/support.

 

[minkeygirl]

Yes. Mental exertion for me is as fatiguing if not more than physical.

You never know what the one thing is that will send you over the edge. Why it sucks so much.

 

[Mij]

I find physical exertion symptoms more distressing than mental. I get over mental exertion much quicker than physical. The physical takes a day or two depending how much I went over, mental exertion I can lie down for an hour or a little more and feel better after.

 

[Sherlock]

October

FWIW, I originally got sick in early October 6 years ago. One feature was that both ears got plugged up (whereas I had never had even one ear getting plugged up before).

In early October 2014, I was getting both my ears plugged again, as if there was some pollen or something that was stirring up systemwide inflammation and making me ill all over -- and that also made it very hard for me to concentrate during that period.

 

[Hip]

I almost don't get any PEM from physical exertion, but just 3 or 4 hours of light socializing will wipe me out for the next day or two, due to this mental exertion.

This post explains more about mental PEM, and his post explains my theory of why mental PEM might occur.



Note that by the CDC definition of CFS, CFS symptoms can include: "postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)". Note how it says physical or mental activity.

 

[L'engle]

Yes, for sure. That's why many of us cannot even work sedentary jobs. Mental stamina can be very poor.

 

[soxfan]

I am the same as you all....mental exertion is the worse for me and can land me in bed for days after social interaction...even if it is an enjoyable time. I can do physical activities with just about no punishment afterwards.

I worked for 10 years after the onset and there were days I am not sure how I made it though. I would come home and immediately lay down with my insides vibrating and shaking for hours. The only thing that took the edge off was a little Ativan which I only used if it was almost unbearable.

My mental stamina and response to stress is basically zero tolerance. It is very difficult to shop...drive etc..since that also requires a lot of mental thought.

 

[pamojja]

Physical exertion causes it after continuous 2 hours of activity. Mental after 5. Also lack of sleep (need at least 10 hours daily).

 

[Lissyleigh]

I can tolerate mental exertion better but after an hour I'm done in. My physical tolerance is much poorer. Interestingly socialising is difficult because of the physical effects of talking as much as the mental side. My chest feels v weak after talking.

 

[Billt]

My son gets severe physical fatigue from as little as 15 minutes of concentrating. Even if it is just socializing

 

[Alvin2]

Yes, for sure. That's why many of us cannot even work sedentary jobs. Mental stamina can be very poor.

+1

One thing i have come to realize is that all of us have many common symptoms but everyone presents a little differently. Do what works for you, not what works for me or the next ME/CFS patient. And unfortunately what works this year won't necessarily be the same next year or last year.

 

[alex1989]

Yes, I mainly get PEM from mental overexertion. When I was more severe, I could trigger PEM from as little as 4-5 minutes of reading or more than 15 minutes conversation in a row (and there are many who are worse than that from what I hear). It was always remarkable to me at the time that tiny amounts of mental exertion could result in days of agonising physical symptoms – it still is, in a sense, although my PEM episodes are far milder these days.

 

[svetoslav80]

Yes, absolutely. It depends on the duration but also on the intensity of the activity. I once got PEM after vigorously searching for some information on the internet, for about 3 hours. There are other days when I spend even more time reading, but without searching anything in particular, and I don't get PEM.

 

[Alvin2]

Yes, absolutely. It depends on the duration but also on the intensity of the activity. I once got PEM after vigorously searching for some information on the internet, for about 3 hours. There are other days when I spend even more time reading, but without searching anything in particular, and I don't get PEM.

I noticed this too, its not mental activity but the type. Even the easier type will eventually get me but i can do much more of it

 

[hinterland]

So, what you're asking, is: do people here get **significantly delayed** PEM from mental exertion alone. That is to say, they might crash the next day from cognitive activity the day before that seemed okay at the time.

I'd like to know the answer to that too. With me it isn't so obvious. Usually the onset of mental exhaustion is more rapid, and it can sometimes occur within 20 or 30 mins of an activity requiring some degree of concentration, or mental processing, depending on how intense it is. I could then lay down in a quiet room to recharge, and within 2 or 3 hours have more or less recovered my faculties. However, I've also noticed if I continuously over-exert myself mentally day after day for several days my cognitive performance seriously declines. So there might be a cumulative effect and need for prolonged downtime to recover.

Whereas with physical exertion, on a good day, I can accomplish this at the time and in the immediate aftermath with minimal exacerbation of symptoms, or even some transient relief of symptoms; but several hours later, or even 24 hours later +/- I can crash badly, so that I'm wiped out and unable to do anything but rest in bed. It can then take several days to recover.

Another point is that physical over-exertion causes both (delayed) physical and mental fatigue. Whereas, mental over-exertion only tends to cause mental fatigue, not physical. So, if I've exhausted myself mentally, e.g., a social engagement, I'm still able to do my usual level of physical exercise afterwards, regardless. For example, a short walk. However, I certainly wouldn't plan to do any significant physical activity beforehand.

Another thing -- might be straying slightly off topic here, but anyway -- how long the delay is between physical over-exertion and crashing depends on two things: the level of exertion (duration and intensity), and how close to the 'cliff edge' you are, i.e., the cumulative level of activity in preceding 48 hour period.

Delayed post-exertional malaise (PEM): can it be caused by mental over-exertion alone?

If you don’t get PEM straight away, what are the signs of overexertion?
Have others had experience of delayed PEM as a result of mental activity?
Can it be possible that something can be done comfortably that is in reality very harmful?
Do you get the same symptoms from overdoing it physically and mentally or are the symptoms noticeably different?
What helps?

Thanks very much for any guidance/support.

 

[hamsterman]

100% yes for me. Even if I maintain my heart-rate well below my threshhold, it doesnt matter. If Im truly socially engaged in a conversation... it can cause severe PEM.

 

[Cinders66]

Yes. I'm very severe and just a meeting in my room or even someone washing my hair - the touch stimulation - would at many times of the day be too overwhelming and could cause a flare and crash. this is because we are generally weak/struggling to function not just physically or muscularly tired so any strain or over-stimulation can strain, harm and set off negative physiological response.

You are much more flexible and active in your routine than me so it's difficult to imagine your situation. I was always every day pretty much the same from becoming severe but if it's a new phase for you then maybe the swinging in a boom and bust way is more a feature.

Keeping diarys is the only way to really effectively monitor it as something can feel ok at the time then come back and punch you later. That's the beast of M.E being a difficult to read and manage illness. Cutting activities to a level below what you are doing , If you don't feel it's stable, and then introducing a little at a time might be best to find what your comfortable daily manageable level is where you still do some this but aren't crashing.

However , From what you say it's the adding in extra physical activity such as house cleaning and cooking etc that sounds too much and you could cut that out with help, without affecting quality of life. Mental activity is more important for quality of life so try to not strain that and I'd allow that to be your quality time rather than these short bursts of over doing it physically which seem to harm . Being able to watch tv and computer stuff etc is a blessing in severe ME which can be lost, so trying to get stable and extra help now is wise. The idea with pacing is have a routine of things you can do repeatedly every day. So if you can't cook and clean everyday and you crash after then I'd cut it out. Specialist Ot suppprt might help you asses and plan