I'm able to exercise but am still disabled

Over the last years I've been able to do more and more exercise. I regularly ride my e-bike and am fitter than some other people I've spent time with, yet I still consider myself disabled because I can't tolerate a whole day of activity in the same way a normal person can. I end up feeling bad, stressed and overstretched by the end of the day and it's not sustainable even when what I'm doing is not considered tiring by normal standards.

The idea of a limited amount of energy that can be spent in a day is a useful way to think about it, even though it probably doesn't actually work that way at a molecular level.

I can exercise in good moments, when I don't need to spend energy on other things. I also don't work and if I did, I'm not sure that I would have energy left do exercise.

I'm quite convinced that deconditioning does play a significant role in the symptoms that people with ME/CFS are experiencing. I think patients become deconditioned because the underlying illness makes activity intolerable.

It feels like my brain has not improved as much as my muscles and cardiovascular system. Recently I've also relapsed somewhat, and am finding it very hard to orient myself in a society from which I've been missing for 20 years.

If able to exercise and ME/CFS sounds like an impossible combination, it could be that people are making false assumptions. I think it could be worthwhile to study patients who have ME/CFS and are able to exercise because it removes much of the confounders related to deconditioning.

 

I’ve been bedbound for close to a year. None of my symptoms are related to deconditioning. On the contrary, as long as I avoid PEM, they are far better than when I exercised regularly before I knew what ME/CFS was.

There are obviously many biomarkers that are affected by my severe inactivity, and I’m clearly weaker in terms of strength and endurance, but I never push those limits in my day to day.

 

Could you explain this a bit more? I think it might be hard to tell if improvements are due to exercising or the improvement that made exercising possible in the first place.

 

Yes, I can exercise sometimes—swim, anyway. And all the time I can do it, it seems unbelievable that some of the time I can't.

Except that I get to the point where I really can't, and understand all over again that it's the status of the underlying ME/CFS that makes the difference, not fitness or deconditioning or attitude. I've been through this cycle more than a dozen times over the decades, yet I still seem to go through the same thinking every time.

It's an interesting idea to study people when they're in a good phase, but I'm not sure it would necessarily reveal much. It'd be similar to studying moderately ill people who can get up and potter about the house, and severely ill people who can't.

There might be differences, but it's equally likely there aren't. Or that there are differences between subgroups, but they don't map neatly onto severity.

 

Same as @Utsikt. Like I did physio for two years twice a week (on average) before I collapsed into bed and “became” severe. So I was hella conditioned, but my body broken. (I’m not talking massages and stretching physio. I’m talking 50kg dumbells sprints and leg machines).

Even now, my overexertion is stopped by PEM warning symptoms. Not “muscle soreness” or “lack of breath” typical of deconditioning. I can never get to the point I trigger that without being wayyyyy over my PEM threshold.

Similarly, I haven’t walked in two years, but a couple weeks ago I had an emergency and managed to walk just fine, it’s the PEM after that thrashed me. (I’m still not back to baseline).

 

Yup. I did sprints on rowing machines, leg presses and pullups. I even beat a physio once in an uphill sprint.

I would love to be able to use my body and I’m very glad that some are. But that doesn’t mean that using their bodies caused their improvement, it was probably mostly the improvement that enabled the use, and that made it possible to alleviate the extra burden of deconditioning.

 

Not moving much makes me feel bad, a sort of constant malaise, and leads to a worsening of orthostatic intolerance.

Also, low muscle power makes many activities more tiring.

These things add to the symptom burden and make it harder to do things.

Also, becoming fit was a long and slow process for me. It took years.

 

I think my experience is the other way around. Previously, on just a stimulant, I could exercise for maybe 5-10 minutes as long as I didn't use up all my energy on other things during the day. There were times when I was able to build that up to 30 mins if I was extra careful. Though it really didn't help me overall, the main difference I noticed was that raising my heart rate a little during the same seemed to help with sleep quality a little bit. Whatever bit of deconditioning I was alleviating seemed to be very trivial compared to the other limitations.

But then I found a malic acid supplement that made it suddenly possible to walk for 2 hours straight. I was still tired and sore by the end of it--exactly what you'd expect from someone who was only doing ~10 minutes of exercise once or twice a week before then. But even increasing my fitness since then with more long walks does not seem to increase my health any further. I have not gotten better beyond the boost that malic acid gave me on day 1 of taking it.

 

A better answer would be that having ME/CFS doesn't make one immune to deconditioning and deconditioning will contribute to some degree to how people are feeling.

The concept of deconditioning was abused to deny the existence of an underlying illness and the suffering of patients and that's why it's not popular among patients, but it's certainly occurring to some degree.

 

Deconditioning surely happens, but only to a point that matches your current activity level. So if you’re able to do more, that is an improvement in your PEM threshold (PEM isn’t that straight forward, but let’s just go with it), not an improvement in your conditioning. After doing more for a while, your conditioning will slowly catch back up and level out again at the new level. That might bring a tiny additional benefit outside of PEM, but the improvement in PEM is the main driver.

 

I agree, I've experienced that often. But you can't choose to be able to do enough movement to shake it off.

ME/CFS is in charge, you never get a say in the matter.

Me too, each time I go back to swimming.

But when I have to stop because my capacity has suddenly reduced, the fact that I'm fit makes no difference. I suddenly start getting PEM at a much lower level and needing ages to recover from it, usually for no clear reason.

The periods where I can swim tend to be quite long, though. Obviously I have to balance everything really carefully and never set myself distance or speed targets, but as long as I manage it well they usually last several years. When they come to an end, as they always do, it's a minimum of two years before I can even think about starting again. At one point it was more than ten years.

I can probably only swim because I'm a female (better buoyancy) and I was a trained club swimmer as a youngster. Once I've reestablished a high line in the water my technique's very efficient, and I only pull, never kick. I don't keep it up for long, either. I can cover a lot of distance in 25 minutes and it soon gets boring.

 

My experiences are a bit different.

I wrote on another thread 2 or 3 weeks ago that I had experienced a sudden expansion of my physical capacity. I use a wheelchair and a stair lift and have done for several years but one afternoon recently, on a trip to a National Trust house which didn't have a lift, I wanted to see the upstairs.

I don't climb stairs but adopted a 'have a go' attitude expecting to have to turn around after two or three steps, but I was absolutely fine climbing the stairs at a decent pace, holding the bannister. I climbed 15 steps, sat for a minute on a chair on the half landing, then completed the remaining 9. There was no deconditioning: I am 78. I was quite surprised myself: it felt good. Once upstairs I had to come down pretty quickly because of OI. I don't stand well. How perplexing it all is.

The pem was dreadful. I think I have only left the house for a hospital appointment since then. I value rare outings like this enormously. It's hard to say if the pem could be cumulative. I sometimes wonder about this and have on reflection had to reduce the number of such outings because of pem, but I have no deconditioning. I can still feel physically strong despite ageing and lack of use.

 

I think ‘exercise’ is an unhelpfully concept, what we are talking about is activity and it is irrelevant whether it happens in a gymnasium/swimming pool or as part of ‘every day life’. Our culture has become obsessed with the concept of ‘exercise’ and rehabilitation specialists like it as an abstract concept because it can be done in a clinical or quasi clinical setting, producing an illusion of it being a controlled task, divisible into sub components and objectively measurable.

People choosing to use ‘exercise’ as part of their routine are essentially adding a recreational component to their activity schedule which is absolutely fine as long as they monitor the impact of their overall activity levels on their current health status.

There are questions that could be asked about the impact of isolating physical activity from cognitive or emotional activity, for example walking on a level featureless track as opposed to walking around a supermarket shopping or swimming lengths in a pool as opposed taking children swimming on the beach. There are questions about how intensive versus gentle activity or continuous activity versus intermittent activity impact on triggering PEM. Also there questions about how to measure potential deconditioning and whether specific activities designed to counter specific aspects such as muscle tone or strength make any practical difference to individuals’ daily life.

Given our cultural obsession with ‘exercise’ I can also see individuals improving their self esteem by including in their routine something they feel able to label ‘exercise’, but the important metrics for understanding ME/CFS are not achieving abstracted distance walked targets or time spent swimming goals, but rather total activity over whole days and weeks and the over all activity patterns.

However, if we are wanting members to discuss their personal activity experiences wouldn’t it make more sense to have this as a members only thread.

[added - on the basis of our current knowledge it should be entirely up to the individual how they choose to divide up their potential activity capacity unless they feel the need to seek support for managing specific issues such as avoiding bed sores or pain/muscular issues related to restricted posture.]

 

I'm tired of people telling me how fit I look when I tell them I'm disabled.

 

During my first year of being ill I was still working but had zero left after work and ended up with many crashes of various lengths. I have my suspicions that this contributed to me getting worse.

I really want to exercise

 

There are anecdotal reports of unfamiliar activities (or using muscles that they haven't used a while) triggering PEM. If such patients magically became super fit somehow, they would be less prone to PEM. And the minor improvement in 6MWT in GET trials probably is of similar effect (assuming their data are valid). So, you are probably right in that regard.

That said, fitness is not going to let you defy the fundamental limit imposed by ME/CFS. I, for example, come back super fit after being on the road and climbing mountains for months. (Living on the road used to lift my threshold two folds and now it completely eliminates). Once I return home and settle back to the routine however, I have to revert to observing the old limit to avoid PEM. (The limit at home started to improve in the last a few years, but I have no way of knowing whether or not it would've happened anyway regardless of what I did).

It would not only remove deconditioning as a factor, but it would also draw a more complete picture of ME/CFS. People look at severe/moderate side of the spectrum and then think of it as a problem of energy production, infection or muscle problem. If you look at mild/recovered side, you'd realize that there is no problem with energy production or muscles. The only thing enduring throughout the phases, it seems to me, is PEM.

Edit: added the last sentence.

 

There should probably be a "some" in front of "people". Deconditioning might cause some symptoms in some people, but not all. Physical activity doesn't seem to have any effect on my lethargy, brainfog, or perceived aches. Things that make my symptoms worse (typically food intolerances) reduce my level of physical activity, but as soon as that problematic factor ends, I can go back to normal physical activity. Building back endurance takes a normal amount of time and effort.

My usual exercise is a 45 minute walk. At one point I was doing that walk 6 times a day, along with doing arm exercises (lifting a heavy walking stick in different ways). I was quite disappointed that I didn't notice any effects on my ME or general health.