Do all ME / CFS sufferers have low stamina?

Yes. I get the burning pain too and need to rest till it eases. Arms and legs get it.

 

Yes - I definitely have low stamina now - both physically and cognitively.

 

Just remembered - also couldn't swim more than a width or a length at secondary school - when I was still 'fit' and over a decade before getting ME - without having to stop. I tried everything, but nothing worked - varying strokes, concentrating on breathing, etc.

 

@Snowdrop

That was indeed witty in itself - gotta remember that - "I don't want to put you on the spot". Or the new threat for pwME: I'm going to put you on the spot!

No, no, not the spot, anything but the spot!

Cheers!

 

I actually used to have the same thing many years ago, I’m worse now in general so it’s not the same anymore.

 

Lack of stamina isn't mentioned all that often but (muscle) fatigability is. I'm guessing they're just used interchangeably so indirectly low stamina is recognised under the concept fatigability.

And yes I do get it, too. At one point during an almost-remission period I went on a hiking holiday. For almost 3 weeks I walked 20-25km daily, in mountainous terrain, no problem. Until one day it was a problem. From one day to the next I struggled to go 5km on the flat (had to be rescued by vehicle). Clearly I couldn't have been deconditioned but after those 5km I felt like I'd run a double marathon and then some. Wobbly legs, burning muscles and all (followed by a laundry list of PEM symptoms the next day).

Interestingly, during the first year or so of that relapse I could partially overcome the lack of stamina by taking certain supplements. I never walked 25km again but for a while I could cope with an occasional 5km by taking the supplements. I still got mild PEM the next day but didn't recognise it at the time. The effect of the supplements didn't last. These days walking just 50m will knock me out, with or without supplements. I also wonder if the supplements at the time were harmful in that they made me do more than was safe for me and thereby contributed to my decline (that's why I'm not naming them).

My highly speculative explanation is that the fatigability is due to a failure of the mitochondria to produce enough energy to meet demand. While my ME was mild the supplements doped up the mitochondria enough to meet demand but the mitochondria still pumped out a damaging factor X that causes PEM and longterm deterioration.

 

@Ravn

It is frustrating isn't it that pwME are blamed for being deconditioned, as part of the cause?

Re low stamina, I think it is more than muscle fatiguability, as pwME have an inability to sustain mental activity as well as physical activity.

The term "low or poor stamina"doesn't hold any magic, and quite likely pwME would still be dismissed, but I think it would be good if experts added this term to the symptom list. Perhaps it would help with understanding.

 

As other have mentioned, as a teenager I too could only exercise at maximum effort in short bursts. It was in endurance/racing sports, like swimming or running laps, where I would quickly fold - much to my embarrassment. I thought I was just out of shape, but it's almost certain that I had what's called "exercise-induced asthma," more properly called "exercise-induced broncoconstriction" (EIB) (it's not really asthma).

Basically, if you're susceptible, after a certain amount of maximal exercise, you wind up gasping for breath and can go no further. I'm pretty sure this does not involve crossing the anaerobic threshold. Recovery can take more than a few minutes.

The condition is not triggered by exercise, per se, but is a consequence of rapid airflow in and out of the lungs resulting from high or maximal effort. It triggers a narrowing of the airways which literally prevents you from breathing effectively. It's more likely to happen in dry, cold air, but I doubt that there are environmental conditions which would have spared me from its effects.

Whether this is more prevalent in ME/CFS patients, I have no idea. I suppose anything which accelerates the onset of rapid breathing (low stamina, deconditioning) could hasten the onset of EIB in susceptible individuals.


[After I found out about this, I described my teenage experience with maximal exercise to my cardiologist. He said, "Oh, that's..." and we both said "exercise-induced asthma" simultaneously. I wish I'd known about this in high school. Conking out after half-a-lap on the track did nothing for my self-esteem. I actually remember episodes of this going as far back as grade school.]

ETA - Would be nice if gym instructors were aware of this. Maybe they are these days. My coach never gave me a hard time for giving up in the middle of a race, but I don't think he knew why I [and a couple of other kids] had to stop so quickly. He probably chalked it up to "deconditioning."

 

I've had near-identical experiences in partial remission periods: hiking for miles without rapid muscle fatiguability and PEM, followed by a sudden fall off the cliff (metaphorically speaking) the next day where literally even walking around the block on flat ground makes me weak, shaky, out of breath, heart rate 170, pain everywhere. I cannot relate at all to the deconditioning hypothesis as a result. No amount of exercise I ever did during good periods improved my stamina or my illness, not even a little bit.

 

I find this very interesting. Clearly showing it’s not deconditioning.

 

Same here. It was always my primary limiter during hill climbs when cycling. Very annoying.

When I developed M.E. I did indeed develop suddenly very low stamina - I was never a sprinter, largely because of the breathing troubles I'd have during hard efforts. Instead, I was an endurance cyclist, doing very long distances at significantly sub-maximal effort. Post M.E., I found that I was limited by my heart, rather than my lungs (or my muscles) - I'd be hanging over the handlebars utterly wiped out from no more than a gentle warmup spin. My heart rate would ramp up abnormally quickly, but by the time I reached exhaustion, I'd be nowhere near my max heart rate.

The exercise-induced asthma issue is very different in character to the rapid failure of effort in M.E., to my mind. I'd be surprised to find they were related, although given the overall paucity of biomedical research, who knows?

 

Me neither. At the time had already developed Fibro (started with lower and upper body back pain) and I think it puts one at risk for developing ME/CFS. At age 55 they found I had congenital scoliosis, a very mild case.

I believe Fibro puts one at risk of developing ME/CFS and they say RA, osteoarthritis, and other illnesses put one at risk for developing Fibro.

 

Sudden onset of problems walking was my first indication that something was going very wrong. Could barely move my legs. Stamina hasn’t proved so much of interest as I’ve never recovered the strength to test it

 

I often describe my problems as a lack of stamina but it is really a sudden onset of muscle fatiguability. It feel like something suddenly runs out and I have to stop sometimes for a minute but sometimes for days.

I can track how bad my me is at any given time by it as it is most evident when I try getting up in the morning. I feel just as usual but i have to stop in the middle of being washed, totally unable to move.

 

Reading this thread again, I agree with the term that @Trish proposed - rapid muscle fatiguability is quite fitting. Indeed, usually it feels as if my muscles fail first before other systems do, i.e. the heart and the lungs. Even though, my heart and lungs seem to fail too if I am doing something that doesn't stress a particular muscle much. So I don't know maybe you could say it's both rapid muscle fatiguability and poor stamina / cardiovascular endurance.

Another point I'd like to add is that when you combine this rapid muscle fatiguability with an inability to improve it trough regular exercise you have almost a guaranteed case of CFS/ME. This is obviously well known by people who have tried to do so and is further scientifically supported by the reduction (or lack of improvement) in performance on a 2 day CPET test.

Personally, since making this thread I was once again reminded that it is simply impossible for me to improve my stamina / endurance trough exercise. I recently got an electric bike that helps you pedal and after more than a month of using it almost daily I still get sore legs after using it every time (despite the fact that it is supposed to be very easy due to the assistance). In other words biking with it seems just as difficult as when I first started with no improvement after consistent and regular training.

 

Not sure why I wrote 'over a decade' - it was 30 years before getting ME! BTW I could do other activities quite well - it was just the swimming where I couldn't. Until I took up driving - I found that exhausting too!

 

That's the weirdness of ME.

Quite often it's not the strength involved or even stamina when I'm doing something that's the killer - although they are factors. It's the number of repetitions of the same action, even if the action isn't that fast, doesn't affect breathing rate and doesn't require much strength.