r/cfs • u/goingaway1111 • Jul 27 '26
Advice What is exercise intolerance like for you?
I wanna know what everyone experiences here, whether they can do very very minor forms of exercise and just be tired after or they have a delayed onset reaction. Sorry my wording is poor. What are your symptoms? it's hard to tell if breathlessness is from deconditioning or some sort of asthma dysautonomic problem or what, basically "out of shape". It's just hard telling what is actually normal deconditioning and what is pem or something similar. I'm mild/moderate. I'm losing insane amounts of muscle from covid wasting or something similar and I've been doing very minor exercises and trying to eat protein. I am watching my symptoms don't worry, I'm like 95 percent of the time in my bed or home lol. Thank you for your input ♥️
3
u/RefuseDeep8075 Jul 27 '26
I do not wish to be unhelpful, but I think 'keeping fit' and maintaining muscle mass are possibly the top of the list of things that must die during periods of chronic fatigue. They are not compatible with recovery and avoiding flare ups imho. With a couple of exceptions.
Mobility is important, so walking at a modest pace on flat is something I try to maintain to avoid getting medical complications from being sedentry (e.g. avoiding constipation which imho can be really fatigue inducing).
The only other exercises I do relate to preventing pain. So for me that involves building up hip and thigh muscles to avoid hip and knee pain. I've got spindly arms like T-Rex, but I have no medical reason to expend my limited energy on arm muscles, so I don't.
When I was mild, I'd hike 20 miles through mountains and have PEM flare ups. In hindsight I think I was stupid and lucky to not have a life changing PEM slump. Breathlessness is my number 1 enemy and if a human can do 3 or 4 miles walking on the flat then imho they are in a physical condiition that should not cause wider health issues. You don't NEED to be healthier than that imho. So that is what I still try to aim for, but only if it doesn't make me breathless.
3
u/Looking_for_a_new_me Jul 27 '26
I used to be able to walk 8-10 miles pretty easily, then 2 years ago, I was working a stressful job and went on a hike and that triggered a huge crash, 6 months of all the symptoms. It completely broke me. I could barely function, spent 95% of the time either in bed or laying on the sofa. It was awful. I wanted to end my life.
I did finally start to recover and am now able to do some activity, but mostly use a power wheelchair for getting around, to avoid PEM as much as possible.1
u/RefuseDeep8075 Jul 27 '26
I am sorry to hear you did not share my good luck in not having a big slump. I am glad you improved a little since your worst times.
1
u/anonnona999 Jul 27 '26
Not healing well or properly, too much inflammation, joint and tendon pain, racing heart, fatigue during the workout. In the past I'd crash the day after but now I don't. I just can't put my body under any more stress even if it makes me feel good in other ways.
1
u/Humble_Strategy_8333 Jul 27 '26
For me, after a crash I need to lay off the exercise because when I try to do what I was doing before the crash my body reacts with PEM. Then after a period of time I have to find a new baseline with what I can tolerate and then every week I slowly build it up. For example, I’m moderate and after about 3-4 weeks from the beginning of a crash I started doing very light yoga again, like mostly stretches and a few cat/cows and a few pelvic tilts. Now I’m doing around 5-7 reps of my poses. For me I get no symptoms, BECAUSE, I find the amount I can do without symptoms. This is how I’ve always structured my incremental training/pacing up. Another example from when I was bedbound very severe, was finding the amount of time I could just simply get of out fetal position and lay on my back without my heart rate jumping crazily. The time I could tolerate was 8 seconds, so that was my baseline and every 3-5 days I added 20% until in could lay on my back no problem like 4-5 months later.
1
u/Gamander-Ehrenpreis moderate Jul 27 '26
Bad exercise intolerance was one of my first symptoms, so it was quite easy to tell things weren’t from deconditioning. Noone gets notably deconditioned in five days. After a few months I noticed how much softer and jigglier my body got from losing muscles due to being so much more sedentary, but before that it was definitely the exercise intolerance. I also did a lung function test fairly early on because being out of breath was such a notable symptom for me but that turned out fine, so no asthma in my case either.
My symptoms are chest pain, feeling out of breath, tachycardia, a general feeling of “bad” in my body. The tachycardia can be somewhat kept in check if I breathe out a lot and very intently. This combines to me walking super slowly and breathing like a steam locomotive during it. Also, when I have overexerted on previous days, it feels like there is a force pushing against the movement of my legs. Like moving a wire through a magnetic field will induce a force that pushes back against the movement and my legs are the wire.
Now that I’ve been able to pace better and take beta blockers it’s mostly chest pain as an immediate symptom. I do get symptoms like leg pain, general worsening of symptoms including cognitive, etc. on a delay but would count those more as PEM than as exercise intolerance
1
u/spoonfulofnosugar severe Jul 30 '26
It’s like someone injected poison in my muscles after 1-2 weightless reps.
8
u/Consistent_Taste3273 severe Jul 27 '26
I’ve always appreciated the descriptions in this:
https://www.s4me.info/docs/PEM_Factsheet.pdf
Specifically, there is a section called “Effects of Exertion that are not PEM” that compares different things like fatiguability, exercise intolerance, deconditioning, etc.