How any people have found that any or light exercise has helped improve your illness?

K

Kenjie

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I've read that starting off slow and slowly working way up can help heal our bodies...

Has anyone had success with this?
 
helperofearth123

helperofearth123

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I can walk up to 30 minutes on a good day, but still feel rough afterwards. I usually try to go for a walk because I enjoy being outside in nature and it just feels nice to be out walking. Sometimes I only make it 15 mins though and often I have days where I can't go anywhere at all, but I do as much as a I can.

If I have a bad patch and find myself stuck too tired to do any walking at all for say a week or a few weeks in a row, when I start to feel a bit better again I'll have to work back up to it. So I can't just go from 1 week indoors straight to 30 minutes, I'd build up each day over the course of a few days or so back to where I was before.

But I don't get any better from it though, it just is a pleasant experience when I can tolerate it and may help prevent long-term deterioration.
 
Sushi

Sushi

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Kenjie said:
I've read that starting off slow and slowly working way up can help heal our bodies...
Has anyone had success with this?
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If you have ME/CFS (and that will be the perspective answers come from), I've never heard of anyone "getting better" from light exercise--except for enjoying it and lifting their mood. Most get worse. "Slowly working up" is the basis for the hated GET (graded exercise therapy) that has harmed so many.
 
Snowdrop

Snowdrop

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Mary

Mary

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Kenjie said:
I've read that starting off slow and slowly working way up can help heal our bodies...

Has anyone had success with this?
Click to expand...

Nope. If we were simply deconditioned, then this would help. But that is not the case with ME/CFS. We have severe metabolic abnormalities. See http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFScliniciansguide.pdf
which states in part:

The IOM committee recommends a new name to replace ME/CFS: systemic exertion intolerance disease (SEID). This name captures a central characteristic of the disease—the fact that exertion of any sort (physical, cognitive, or emotional)—can adversely affect patients in multiple organ systems.
Click to expand...

It is extremely unfortunate that the myth that exercise (however mild) helps people recover from ME/CFS is so widespread, in contradiction of all serious research and patients' experiences.
 
Dechi

Dechi

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Exercising helps my mood, but it can never be done on a fixed schedule or fixed amount of time. I can only do it when I am well enough, for a very short time. I haven't got better from it, I've often got worse from overdoing it, even just a little bit. One must exercise very, very carefully.
 
A

Aurator

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I was a committed amateur athlete before falling ill over four years ago. I know a great deal about how to steadily build up fitness and make gains in performance, if anyone does.

I knew a great deal, I should say - because ME/CFS has made a mockery of what I knew before. No matter how many times I have attempted to build up from a not very impressive level of activity, the illness has rudely slapped me down again. I still attempt to "push the envelope" now and again, but all results so far have shown doing so to be futile or actually counter-productive.

GET proponents will be quick to insist I am doing something wrong, or that "fear-avoidance" is holding me back. But I know significantly more about exercise than most of them; I could and did push myself to extreme limits of endurance when I was well, and I have much stronger personal incentives to improve my current activity levels than the dubious incentive of pleasing them. Yet I still don't improve.

It's perhaps the most insulting and perverse aspect of the way people with this illness get treated that the thing we want most, which is to do more and be fit again, is the very thing that the psych lobby would have it we are deliberately preventing ourselves from achieving. However many people tell them otherwise, and however articulate these people are, the psych lobby just don't get it, or maybe just don't want to.
 
Johnskip

Johnskip

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Aurator said:
I was a committed amateur athlete before falling ill over four years ago. I know a great deal about how to steadily build up fitness and make gains in performance, if anyone does.

I knew a great deal, I should say - because ME/CFS has made a mockery of what I knew before. No matter how many times I have attempted to build up from a not very impressive level of activity, the illness has rudely slapped me down again. I still attempt to "push the envelope" now and again, but all results so far have shown doing so to be futile or actually counter-productive.

GET proponents will be quick to insist I am doing something wrong, or that "fear-avoidance" is holding me back. But I know significantly more about exercise than most of them; I could and did push myself to extreme limits of endurance when I was well, and I have much stronger personal incentives to improve my current activity levels than the dubious incentive of pleasing them. Yet I still don't improve.

It's perhaps the most insulting and perverse aspect of the way people with this illness get treated that the thing we want most, which is to do more and be fit again, is the very thing that the psych lobby would have it we are deliberately preventing ourselves from achieving. However many people tell them otherwise, and however articulate these people are, the psych lobby just don't get it, or maybe just don't want to.
Click to expand...
well said it is truly amazing how people are mislead about this illness
 
V

Valentijn

Senior Member
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Kenjie said:
I've read that starting off slow and slowly working way up can help heal our bodies...
Click to expand...
It isn't true for ME unfortunately. The disease is defined by a specific form of exercise intolerance, so it would be rather odd if more exercise was somehow the cure.

But there have also been numerous studies into GET (graded exercise) in ME/CFS patients, none of which show any objective improvements. Patients don't become more active, or able to work more, or less reliant on social benefits.

This can be a confusing subject, because most GET trials will report success - but only in subjective self-reported fatigue. In trials with objective measurements, such as actometers, the objective outcomes contradict the subjective outcomes, which means the positive subjective reports were unreliable.

GET doesn't work, even when delivered for months on end by experienced therapists.
 
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C

Chrisb

Senior Member
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1,051
I agree with everything that has been said. The only point which I would like to make is that this should have been well known to researchers by no later than 1990. One suspects that if the psychs had listened to the physicians they could never reasonably have held the views which they came to espouse.
 
dangermouse

dangermouse

Senior Member
Messages
430
Aurator said:
I was a committed amateur athlete before falling ill over four years ago. I know a great deal about how to steadily build up fitness and make gains in performance, if anyone does.

I knew a great deal, I should say - because ME/CFS has made a mockery of what I knew before. No matter how many times I have attempted to build up from a not very impressive level of activity, the illness has rudely slapped me down again. I still attempt to "push the envelope" now and again, but all results so far have shown doing so to be futile or actually counter-productive.

GET proponents will be quick to insist I am doing something wrong, or that "fear-avoidance" is holding me back. But I know significantly more about exercise than most of them; I could and did push myself to extreme limits of endurance when I was well, and I have much stronger personal incentives to improve my current activity levels than the dubious incentive of pleasing them. Yet I still don't improve.

It's perhaps the most insulting and perverse aspect of the way people with this illness get treated that the thing we want most, which is to do more and be fit again, is the very thing that the psych lobby would have it we are deliberately preventing ourselves from achieving. However many people tell them otherwise, and however articulate these people are, the psych lobby just don't get it, or maybe just don't want to.
Click to expand...

I absolutely agree, I find it very insulting to know that the BPS followers think that we deliberately prevent ourselves from achieving. I find it cruel and hurtful that anyone could believe that pwME would want to be in the position that we're in. We want to do more, we want to be consistently fit again..they preach to the wrong people about trying to do more, they don't know the patient group very well, in my opinion pwME are the most courageous that you are ever likely to meet.
 
M

msf

Senior Member
Messages
3,650
It doesn´t work for me as exercise as such, but walking helps to drain the lactic acid out of my muscles, as long as it is done slowly and not for too long (if I´m having a bad day, half an hour is enough, but last year I managed to walk all day on a few occasions without much payback, except for a bit of stiffness which is to be expected even if you don´t have ME). If you think about it, sitting on a sofa counts as exercise for some people with ME, and I have found my body is happier walking around slowly (i.e. sightseeing) than sitting in a chair all day using my computer - in the second case you are likely to be using just as many muscles, but the key thing for both me and my father seems to have been that when you walk you are tensing and relaxing your muscles, whereas when you hold something for a long time (including a stance or sitting position) then your muscles don´t get a chance to relax.

Of course, I am a man with moderate ME, so it is quite possible that even walking slowly will make those with severe ME (or perhaps moderate ME for a woman) worse.

I just realised, it might not be that the walking helps to drain the lactic acid out of my muscles so much as the walking doesn´t cause lactic acid to build up as fast as sitting in a chair and using a computer.
 
Binkie4

Binkie4

Senior Member
Messages
644
I think that how bad/ whether you have orthostatic intolerance is a factor. Anything upright crucifies me- I could no more sightsee than fly unless I was in a wheelchair. I try bedbased movement/ activity.

That being said, I have had spells where I drove to the gym and had a coffee feet up then deciding if I was well enough to go into a studio and do 5/10/20 minutes of something, then back to rest, feet up, before driving home. It added variety and I felt good.

My aim is to get back to this place, still with ME, but trying hard to prevent my body deteriorating further.

I would no more do GET than jump in a river, but self directed and monitored, if I improve, yes.
 
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