Is there such a thing as to much rest with CFS?

[ukxmrv]

I get better the more I rest. We used to call it ART (agressive rest therapy) in the 80's

We have had long threads before on PR on deconditoning and I remain sceptical that this has any bearing or importance to the majority of PWME who have post exertional symptoms as a main part of their illness.

 

[ukxmrv]

I can't speak for @panckage but I did not get that impression.

Deconditioning has to occur. It's a consequence of any severe illness.

but there is no proof that decondioning is occuring for any one ME patient or for a majority of us

We need research that shows what decondioning would mean for a PWME and just how much activity we would need to avoid it

Saying that deconditioning is occuring is meaningless and without evidence. It may be that for PWME such a small amount of activity is needed that we don't become deconditioned.

It may be a feature of this severe disease that deconditioning is physically irrelevant.

 

[worldbackwards]

To return to the question, my experience is that you can rest too much, but that doesn't necessarily lead to deconditioning. Permit me to reminisce...

*sound of harps*

It is the winter of 2003. I've just had a bit of a relapse and am sick to death of faffing about with intractable temperature symptoms. I am, at this point, not doing very much anyway, probably only sat up for a couple of hours a day, but it is reasonably stable if I don't do anything silly. I decide to try and cut down to see if the temperature symptoms ease off, with the goal of being able to move forward again possibly if things become easier to manage. Initially I feel a bit better but in the coming weeks things get substantially worse. After a couple of months, plenty of time to become more deconditioned at the rate I was going, I decide to put things back up. I feels a bit risky to do all at once but I feel like I've backed myself into a corner and it probably can't get much worse. So I go back to what I was doing before.

I feel better straight away. There is no deconditioning to speak of.

I then foolishly feel emboldened by the improvement that stems from this activity and try to sit up to do all the things I usually do lying down. I have a relapse after a day or two and it takes a week or more to settle down.

Basically I found that, if I am keeping up a rate of activity without it making things any worse, that does more good than taking extra rest. But it doesn't do any long term harm to cut it back for a while and it certainly doesn't mean that doing more will automatically make you feel better. It's not good to be in bed for longer in and of itself if it isn't actually necessary, but that doesn't mean that you don't have to spend a lot of time in bed.

If you see what I mean...

 

[alex3619]

I feel better straight away. There is no deconditioning to speak of.

On a spontaneous remission, the overnight kind, I went from barely able to manage a shuffle-walk over short distances, to being able to run for over a mile. The next day I was back to a shuffle-walk. The usual theorizing about deconditioning does not explain this at all.

 

[alex3619]

We have had long threads before on PR on deconditoning and I remain sceptical that this has any bearing or importance to the majority of PWME who have post exertional symptoms as a main part of their illness.

I think it reasonable to presume that deconditioning occurs, but we are not typical either. Deconditioning in ME has some of the flavour of considering the impact of a lit candle in the middle of a forest fire, and ignoring the forest fire and deciding to put the candle out as if that fixes things.

 

[lansbergen]

Deconditioning in ME has some of the flavour of considering the impact of a lit candle in the middle of a forest fire, and ignoring the forest fire and deciding to put the candle out as if that fixes things.

Well said

 

[alex3619]

Deconditioning is more of a psychological issue rather than a physical one.

This is contrary to all the science I have ever read on deconditioning. There is, in extreme cases (and yes, extreme cases do exist) a big impact from extreme deconditioning. Take someone in a limb cast that needs to keep it on for many months. The brain loses the connectivity to move those muscles. The brain adapts. So when the cast comes off it takes a long while to get the brain to adapt to moving the limb again.

This is not psychology. Its brain physiology. The psychology is about how the patient feels about that. Its about coping style.

In ME there is physiological impact on the brain. Neurological functioning is dependent on energy supply. If the speech regions are compromised then someone may have trouble speaking, or even find it impossible. Again, physiology not psychology.

Psychology can have some impact on physiology, but most of the claims of such impact are exaggerated unproven hypotheses. In the case of broad and complex diseases, especially multisystem diseases, I find biological hypotheses far more plausible.

Who agrees with this statement? In the absence of a proven biological mechanism for disease, the disease must be psychological!

Let us use the same logic the other way around. In the absence of a proven psychological mechanism for disease, the disease must be biological. Kaboom!!! There goes the entirety of psychiatry.

This tells us the reasoning is unsound. The unknown is the unknown. What we can say is that in the history of medicine no distinct disease that was claimed as psychiatric was ever proven to be psychiatric. None. That does not mean such disease does not exist. It means that psychiatry has not yet established its scientific basis. That means that treating such things has to be done with caution and an awareness that you could be wrong about even the most fundamental things, including diagnosis.

Now there is clearly a psychological disorder that does exist and does not have physiological causation. That is false belief systems. That is however a big problem in society, and is cultural as well as personal in scope. Its also a big issue to medicalize it. Who are the ones with false beliefs? Democrats or Republicans? How do you justify your answer? What if both views are wrong to some extent? Who is provably right, athiests or the religiously devout? How do you justify your answer? These are social and cultural issues, though individuals can and do develop unjustified belief systems, and we are even taught them in school.

Again, my position is a moderate one compared to those extreme positions.

I had a chuckle at @TiredSam 's reply to this. Taking the average is not guaranteed to be the right position. If some doctor decided someone needed a heart and lung transplant, and one doctor thought that they did not, would you give them a transplant of one lung and half a heart? There are some kinds of questions in which this moderate view heuristic is useful, and others where it is a nonsense. If one doctor decided someone needed that transplant NOW, and another thought putting it off for a year would be a good idea, then there is some scope for considering an in-between position depending on the evidence.

 

[worldbackwards]

One point about deconditioning is, when it is set in over years, it can be difficult to reverse because of it's overlap with the ME itself. I remember when, after a very long time, I started to simply lift a plate and carry it from room to room, it was very difficult to judge to level of pain that could be tolerated. I could only do it once a day for a long time and for the first week my arms were very sore. If I tried to do it more often, they became too painful to carry on and provoked a general deterioration.

This overlap can make deconditioning a real bugger to shift, but I thoroughly endorse Alex's 'candle' analogy. My first 18 months of being ill were spent fighting on until the point that I could barely move - it's laughable to assume that I made this happen with deconditioning, it is simply a by-product of the very low levels of activtity is is entirely necessary to cut down to sometimes.

 

[Jenny TipsforME]

I think a lot of energy is wasted on this type of argument. More or less every illness is physiological even the ones labelled mental. Interestingly mental health research is all biological in the UK at the moment. This does seem odd though, I think psychological techniques can help mental illness even if the cause is mainly physiological.

There are very very few conditions where you can say the cause is the content of someone's thoughts. Unfortunately False Illness beliefs would be one. I'm not convinced that this is a condition anyone genuinely has though!

 

[lansbergen]

I had a chuckle at @TiredSam 's reply to this. Taking the average is not guaranteed to be the right position. If some doctor decided someone needed a heart and lung transplant, and one doctor thought that they did not, would you give them a transplant of one lung and half a heart?

 

[worldbackwards]

I had a chuckle at @TiredSam 's reply to this. Taking the average is not guaranteed to be the right position. If some doctor decided someone needed a heart and lung transplant, and one doctor thought that they did not, would you give them a transplant of one lung and half a heart?

I think we need to have that debate.

 

[TiredSam]

I had a chuckle at @TiredSam 's reply to this. Taking the average is not guaranteed to be the right position. If some doctor decided someone needed a heart and lung transplant, and one doctor thought that they did not, would you give them a transplant of one lung and half a heart?

I wonder if private doctors offering low-dose rituximab might be a more relevant example of this?

 

[Mij]

but there is no proof that decondioning is occuring for any one ME patient or for a majority of us

For the first 6 years of illness I was horizontal 95% of the time, when I slowly started to improve I was very surprised how easily I could pick up walking again. I was able to gradually increase walking distances in 5 minute increments, it took around 8 months to reach 30 minutes. I was only able to do this because I felt better for whatever reason- not because I pushed myself!

I did not feel deconditioned during that time though, but I was much younger then and still had quite a bit of muscle mass from my running years.

 

[Jenny TipsforME]

@Mij I wonder if we're using different definitions of the word deconditioned? I think most healthy people would consider building up in 5min intervals reconditioning.

It just seems logical that there is some deconditioning. I worry that it lacks credibility to deny that. The question is cause or effect? My lived experience would point to consequence of ME /POTS not causal (eg sudden relapse, dog walking one day hard to sit up the next).

ALSO, though most of the weakness in ME can't be attributed to deconditioning. Eg some days I feel very weak walking up stairs. The next day I can have no problem and walk up at the same pace as anyone else. However if you cured me tomorrow I wouldn't suddenly be able to go running for an hour.

The candle in the forest is the best analogy. Deconditioning probably isn't the most important thing to focus on.

 

[Mij]

@Jenny TipsforME you're right, we might be interpreting deconditioning differently. I personally don't feel as though I had lost muscle strength "2-5% per day" back then. So I was reconditoning as you say.

I agree that weakness in M.E can not be attributed to deconditoning (good point) because like yourself, one day I can go out power walking up to an hour and now I'm not able to stand too long to cook a simple meal.

Pubmed definition:
Deconditioning is a complex process of physiological change following a period of inactivity, bedrest or sedentary lifestyle. It results in functional losses in such areas as mental status, degree of continence and ability to accomplish activities of daily living. It is frequently associated with hospitalization in the elderly. The most predictable effects of deconditioning are seen in the musculoskeletal system and include diminished muscle mass, decreases of muscle strength by two to five percent per day, muscle shortening, changes in periarticular and cartilaginous joint structure and marked loss of leg strength that seriously limit mobility.

 

[PennyIA]

I am trying to rest for 10 minutes every hour or two.. But there are days where I'm just 2 fatigued and I end up in bed resting for hours at a time..is it bad for me to rest too much?

I haven't read the whole post... but I'd argue that you are probably STILL over doing it by ONLY resting 10 minutes every hour or two if you are still crashing.

• Deconditioning is a slow and gradual process that improves the more you do and it takes several weeks of inactivity for muscle wasting to occur which has VASTLY different symptoms than PEM. For proof find someone who has had a broken leg/arm and/or dealt with ALC tears, etc. where the doctors immobilize that limb.
• ME/CFS contains a component called PEM - which hits HARD (though often delayed) after too much activity. AND 'the line' of too much can change from day to day, let alone activity during that day.

When I'm not doing very well, I was active 10 minutes out of every two hours - AS LONG AS IT DID NOT LEAD TO A CRASH, if it did, it was still too much.

But that's at certain points in time. I think that the VAST MAJORITY of ME/CFS patients tend to err on the side of too much more often than they EVER end up doing too little.

 

[*GG*]

If someone is deconditioned (not ME related) eg injury they can usually regain fitness progressively and fairly easily. The problem we have is attempting to do more can end up making us less fit.

This last month or so I've been more boom and busty I think from trying to increase activity a little. My POTS doctor thinks this is the next stage (but bear in mind he asked me if I was going to the gym when I was sitting in front of him in a wheelchair). I find if I do more I then flare up and I'm horizontal for a few days, bad for POTS deconditioning. This isn't what I'm doing, but if you measured in steps perhaps it would look like this:

I see people at the gym in Wheelchairs, so not a totallly off the wall question

GG

 

[PennyIA]

ok do not shoot me but here is what I have learn in 10 years and many many many relapses.
1) You will not get better unless you rehab "excercise", I think as if I had a brain stroke and have to start to relearn everything from scratch. Mentally and physically.

I'm pretty sure that this truly applies when you are CURED of a condition, and not battling more relapses.

I think that the fact that you have had many relapses means that you might have done better with more prescribed rest.

That said... I think that 90% of the PWME that I've known or met on this board TEND TO automatically increase their activity levels the minute they believe they can tolerate them... because we're ALL VERY EAGER to get to do the things we don't feel like we can. The minute we get to feeling level we will 'excercise' just by the default of the fact that we can. We don't need it to be prescribed.

 

[cmt12]

I had a chuckle at @TiredSam 's reply to this. Taking the average is not guaranteed to be the right position. If some doctor decided someone needed a heart and lung transplant, and one doctor thought that they did not, would you give them a transplant of one lung and half a heart? There are some kinds of questions in which this moderate view heuristic is useful, and others where it is a nonsense. If one doctor decided someone needed that transplant NOW, and another thought putting it off for a year would be a good idea, then there is some scope for considering an in-between position depending on the evidence.

I agree with this of course. My point that my position is moderate was in response to the remark that it is controversial. I wasn't arguing that I am right because my position is moderate.

I shouldn't have posted what I did in this thread since it's not productive even though when I posted it, for some reason I thought it could be. Sorry again.

 

[Jenny TipsforME]

@*GG* yes people who are in wheelchairs for non-sickness disability would be likely to use the gym. I'm certain that he knows I use it for POTS/ME otherwise other conversation not relevant (eg showing graph standing vs sitting heart rate, asking him for help to sort out concrete legs). It's not likely to be worthwhile for someone with that severe ME to use a gym. Getting there would wipe me out... To be fair the next appointment went a lot better, either he'd been having a bad day or I successfully explained my situation. I do think he's right about exercise and POTS, it makes sense, but I don't know how to get round ME saying no!

Side comment: since starting to use a wheelchair in public only one HCA asked about it, no other medical staff have mentioned it.