Anyone else find exertion not related to crashes?

[panckage]

As the title says:

Anyone else find exertion not related to crashes?

My crashes (hours, days, weeks or longer) seem unrelated to physical activity. They appear to be completely random. Pacing does not seem to help me whatsoever.

Random facts about me:

-when I'm bad I have trouble standing or sitting so I just lie down a lot. I have headaches, brain fog, fibro, fatigue. All the usual symptoms, like a zombie
- unmedicated if I do try to exercise my heart maybe goes up to 110bps or so but it makes me feel feint so after 5-10min so I just give up and stop. I feel like a car stuck in first gear... This exercise has no effect on my subsequent symptoms

-Usually I can exercise If i take ritalin and/or marijuana and/or opiods (always low doses for marijuana and opiods). When I take these my heart goes up to relatively normal range when I exercise (average ~130bps or so. More than 140bps average or so does seem to be a problem though). It feels good. After exercise I might feel a little better or a little worse. Usually though I just feel the same as before the exercise

-I do notice sometimes I can exercise myself out of a crash sometimes if I regularly take my medicine and regularly exercise for a few days

- Going on a CFS/ME reading binge recently I've tried to vilify pushing myself physically and try to pace myself... but really "listening to my body" and slowing down only increased my symptoms in my case. I understand pacing helps many of you. I have no argument with that. What I'm trying to find out is why my case seems to be so different.

 

[Effi]

hi @panckage have you looked at your mental exertion? I crash just as much from mental exertion as from physical. Reading, concentrating, watching a scary movie, talking on the phone to a friend. Also, do you have any emotional stressors in your life at the moment? Those can also wreak havoc on your system energy wise. It's not all about the physical exertion.

 

[GracieJ]

I can crash quickly if my heart rate goes up for even a few minutes. If I go slow, I can do more. It took years to catch on to it.

 

[Valentijn]

My crashes (hours, days, weeks or longer) seem unrelated to physical activity. They appear to be completely random. Pacing does not seem to help me whatsoever.

Random facts about me:

-when I'm bad I have trouble standing or sitting so I just lie down a lot. I have headaches, brain fog, fibro, fatigue. All the usual symptoms, like a zombie
- unmedicated if I do try to exercise my heart maybe goes up to 110bps or so but it makes me feel feint so after 5-10min so I just give up and stop. I feel like a car stuck in first gear... This exercise has no effect on my subsequent symptoms

Have you been evaluated for Orthostatic Intolerance (OI)? Your symptoms would fit with that, whereas PEM would usually have some additional neurological and immune symptoms.

OI primarily hits in response to being upright too long. Exercise can also trigger it in OI patients, but should be safer when sitting or lying. Basically blood pressure or pulse pressure usually drops too much after being upright too long, and sometimes tachycardia results.

Conversely, building up muscles can help with OI.

 

[panckage]

Ok I think I figured this out. Keep in mind that my CFS is considered 'mild' or a score of 60 on the other rating scale.

Friday I was feeling very good. I took my drugs and was feeling even better I did my normal exercise of biking and strength training. The only thing different is that I had a lot energy so I pushed myself and had a great work out. Heart rate wasn't unusual though. Usually there's a bit of a (non-cfs related) crash when the ritalin wears off but not then. Had great energy the rest of the night. Had such great energy I couldn't sleep . Well next day I was pretty much bed/couch-bound. Since then I've slowly been returning to normal. It feels like I have woken up from a coma. Everything seems foreign and new. Anyway looks like I have found my PEM .

I recognize now I've had the same experience many times. What I believe makes me unique though is I need drugs to have PEM! When I try to exert myself (drug free) my heart rate just stays low (like my metabolism is not increasing to meet the increased energy demand) and I feel faint. My body doesn't seem to be able to use enough energy to cause PEM normally. Its only when I take a stimulant (eg. ritalin) that I have to worry about triggering PEM. Even then it seems pretty rare that my ritalin induced exercise causes PEM. Yay for high functioning

So I'm curious. I've never heard about anyone else not being able to push themselves hard enough to get PEM. I mean even bedbound patients can get PEM from walking to the bathroom and back. Why do I need a stimulant to cause PEM? Why can't my body achieve PEM without stimulants? Any ideas?

@Effi I've learned mental exertion is a big problem for me. I'm not sure if it causes crashes but if I worry I get stuck on the same negative thought. It becomes very debilitating!

 

[panckage]

- unmedicated if I do try to exercise my heart maybe goes up to 110bps or so but it makes me feel feint so after 5-10min so I just give up and stop

Figured this out. It is called chronotropic intolerance. According to health rising it appears to be a common symptom of CFS. I tried searching PR but it looks like it's never been mentioned here before. So in my case ritalin helps a lot with chronotropic intolerance. Maybe it fixes it completely? I start to feel not good if my heart rate goes too high on ritalin but I think it completely eliminates the upper limit for my heart rate. Not something I am going to test though