Do all ME / CFS sufferers have low stamina?

I've had the disease for 17 years now, sudden viral onset in teenage years. It used to be mild, but over the years it progressed. My nr 1. initial symptom was drastically reduced stamina. I didn't have PEM at the time so I was able to exert myself. Before the illness I used to enjoy jogging, mostly just for fun, when going from A to B I used to jog instead of walking, because I enjoyed it. I could jog continously for 15+ minutes without feeling worn out or tired.

Immediately after it started, my stamina was reduced drastically. I could only jog for 1 to 2 minutes before feeling completely out of breath and destroyed. This has persisted until now. I tried to build up my stamina, by running every day. After a several weeks of doing this, the improvement in stamina was negligable so I stopped. I've also had an exercise test confirming the stamina reduction. I was in the bottom percentiles for my age group, despite being at a low body fat and having a low weight.

These days I no longer try this, due to the fear of PEM. But still, this is the nr 1 thing that objectively indicates that something is wrong. If tomorrow I could magically run 10+ minutes without feeling dead, then I know I have recovered.

So I wonder, is this true for everyone? Do some people have the capability to jog / run for extended periods, but choose not to, due to PEM or other reasons? Or are there sufferers who do not have reduced stamina, but still have other fatigue related symptoms?

 

I suffer from reduced stamina. It’s like there’s nothing in the tank .. low energy and very little by way of stamina .. both physically and mentally.

Each morning I have a feeling of dread as I wonder how the hell I’ll get through the day.

Yes, rapid muscle fatiguability - I often need to sit down quickly.

 

Stamina: "The ability to withstand long physical or mental strain." Oxford English Minidictionary

I haven't often noted low/very low stamina as part of the symptom description for ME, and was surprised and happy to see this in a recent NIH article. Low/very low stamina should most definitely be listed as part of the symptom picture IMO.

I have rapid muscle fatiguability. But with burning muscle pain thrown in. So for example climbing stairs - after less than 10 steps my leg muscles burn like I've run for many miles, and I have to stop and wait till the burning/pain stops. Same with the use of my arms - the muscle burning comes on shortly into the activity, and I have to stop, wait for the pain to receed, then continue, stop, wait for the pain to receed etc. However, there is an overarching lack of stamina, and easy fatiguability that sets in early on, and I often have to abandon the task for another time, and go and rest. This could be just 2 or 3 minutes into the task.

I get very tired of the muscle pain with almost everything I do, including typing this response. Good though, to discuss this as we are, and thank you for raising it, @borko2100 .

 

I also developed low stamina after getting ME/CFS. I do push myself to keep physically active, but I can't do anywhere near what I could do pre ME/CFS. I think that I am in the minority here in that I don't worry about PEM. I know I will get it once I've pushed myself too far, but to me it is worth it. I want to get as much out of life that I can while I can.

@DokaGirl and @Trish I also get the burning muscles in both my legs and my arms. Some things don't cause it, but others such as walking up stairs or blow drying my hair will cause it to start. Within seconds of stopping what I'm doing, the pain goes away. I find with my arms it is usually if I have my arms raised that I get the muscle pain, but if I'm doing something like raking leaves it takes a while before I notice any pain.

 

Yes I was surprised by this too. In the ICC criteria for example PEM is a requirement, but stamina is not mentioned. In my opinion it should indeed be in the criteria, as it is something that can be easily and objectively measured, for example with a bike test. I believe that doing this will give more credibility to the illness as it is much more objectively measurable symptom as compared to general fatigue or PEM for example. For example, a requirement could be that in order to be diagnosed a patient must fall below a certain percentile for his age group. Doing this will of course exclude people who have PEM and normal stamina levels, but how many such patients are there? And are they correctly diagnosed?

 

Yes, low/very low stamina should definitely be included. I am surprised this has been missed by some biomedical experts.

Problems with stamina, may, just may be better understood by the public as a significant problem, whereas "fatigue" has not. After all, many healthy people who are perpetually fatigued due to work loads, and home responsibilities carry on, whereas low/very low stamina may speak to something more serious going on. I hope problems with stamina are more popularized re ME.

 

Same here.

The weird thing was that I could still sprint faster than most of my peers if the distance was short enough (50 meters for example) and I did not have a reduction in strength (for example in lifting a heavy object) if the exertion was short enough. Anyone experienced that as well, that discrepancy betwedn short and long term exertion?

 

Hi @borko2100

I'm no expert on exercise testing for ME but I think what is being measured is a comparison between first day and second day abilities to function by the individual not a comparison between different individuals.

Here's a link to a group that does this testing: https://www.workwellfoundation.org/testing-for-disability/

Also, just to point out that a subgroup of people would be left without a diagnostic as exercise testing is not possible for everyone as some people are far too severely ill to do it.

 

I have low stamina. Can start off feeling almost human (if it is a very good day) but quickly run out of muscle strength i.e. do a few steps at a proper pace but then quickly this turns into a slow shuffle.

This has been complicated to work out as I have had POTs since a teenager and would faint in hot weather. Suspect that I have always had some sort of separate stamina problem as well though.

At school as an example I was crap at sports. Would start off at tennis really well but this would mysteriously deteriorate within a game with me just running out of stamina. No puffing but just weak and unsteady.

The only thing I was good at was horse riding and I suspect that it was because the horse was doing the running and the motion was sending blood around my body to help the POTs. That was pre-ME and there were no post exertional symptoms back then at all.

My ME was viral acute onset and I was able to exercise but at my own pace before then. After ME struck it was completely different.

If I start to write a letter or the yearly chore of Christmas cards my handwriting starts off well but even on one card I can't get beyond 2 sentences with out my writing turning into a faint scrawl and holding on to the pen becomes more and more difficult.

 

Yes.

 

I also have overall muscle pain and a feeling of heat and burning at rest. This is exacerbated with movement.

 

@Snowdrop, would you say just doing one bike test might indicate low stamina, if the pwME only went a few short minutes? (I understand you won't be able to asnwer this re forum rules) This is my supposition at any rate.

So not a 2 day bike test - just a one day bike test. I understand deconditioning may be raised as a cause if the pwME manages much less than 10 minutes on
the bike. As well, cardiovascular disease may be a consideration.

ETA: for clarification.

 

I guess so. But I'm not certain. I've been much less ill than I am now (my way of avoiding the 'mild' word) and I think that in the short term it's possible to push harder than it would be if the test was longer.

So . . .

I don't really feel in any way qualified to make a comment on that. I don't know anything about this nor do I understand it. I only made a comment in regard to exercise testing because I didn't know if borko being relatively new here was aware of the workwell stuff and wanted to clarify that not everyone could do the test (that would include some moderate people who could become severe by trying).

I also think this is an area that has not had much (outside the CPET) research that has teased apart the various pieces that make up the subject. And I think your remark about cardiovascular issues is on point. I sometimes wonder if I have some CV issue that is not diagnosed but my medical experience thus far has put me off trying to find out (when I still had that as an option) because of my cognitive issues.

 

for me, the muscle/exhaustion thing is very well explained with "mitochondrial dysfunction".

and it seems, that mitochondrial dysfunction may play out more with some exercises than others (e.g. apnoe diving).

then such a mito-dysfunction-test could distinguish the "pem" from deconditioning ?

the muscle/breathing-thing i had already well below age 10.
later, perhaps from late teens, there comes deconditioning, its normal imo, lifestyle is less active.

but later in age, there happened something else.

life is like flip-flopping between alkalosis and acidosis.
and there is no buffer at all anymore.

every piss has an immediate and lasting effect, while healthy ppl may have such a "ph-buffer".

i think this all - mitochondrial dysfunction & flip-flop - fits very well with the ido-theory.
it doesnt have to be genetic.
imo.

 

I used to be able to run fast, but often only for short distances (e.g. at school, and I didn't get ME until I was 42).

I'm not sure whether the ME leg fatigue was obvious straight away; I think it was more gradual in development. I remember being puzzled by the extreme fatigue in my leg muscles when walking up a fairly short, not very steep hill to a neighbour's house.

 

@Snowdrop

Thank you for your reply. Our posts crossed a bit as I added a clarification re not able to give medical advice on the forum - apologies if you felt put on the spot - thank you again for your considered reply.

I have some cardio problems - mild for now - could progress - I have had less than stellar experiences with specialists in this area. It's shocking, but common, I believe that pwME who may have cardio issues are disbelieved and dismissed by specialists.

 

No worries. I didn't even occur to me. I want to make some witty remark about standing on a paper circle (being put on the spot) but I'm afraid that's beyond me.

 

I looked up a study regarding the CPET test that snowdrop mentioned. They did 2 tests, meant to push the subject to failure. In the table attached below you can see the maximum power reached in watts. It seems that, the CFS group had reduced power ouput (stamina) even on the first test. So clearly, reduced stamina is an important feature of the disease.

However, even if unlikely, it is possible that this reduction in power output is due to deconditioning. In order to disprove this a study should be done, where the control group is comprised of deconditioned individuals.

Here is a link to the entire paper:

https://academic.oup.com/ptj/article/93/11/1484/2735315