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

[panckage]

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

For me it is for relapses. I've experienced this 2 or 3 times already. When I'm relatively good I can exercise, my body is strong enough to do the dishes and have good posture. When I'm bad I can't really do these things. After I start to get a bit better again I start exercising again and it takes several months before my body is strong to do the dishes and other menial tasks

 

[halcyon]

is it bad for me to rest too much?

I would say no, especially in the early stages of the disease. The ME experts noted that those that were given complete rest at onset had the best prognosis for improvement or even recovery in some cases.

I think almost universally, chronic ME patients are all doing more than they are capable of and not resting as much as they should be. Most patients don't have the level of care and support that would be required to rest enough.

We're built to run and climb and walk miles every day. I think you'll find it's pretty impossible to impose limitations on yourself for long periods of time that don't match your level of ability. If you're doing less than you're capable of you'll probably find yourself becoming extremely bored and restless. If you're doing more than you're capable of you're going to feel sick constantly. It's really not that difficult to gauge once you recognize the correlation between activity and the damage it does, at least that has been my experience at the moderate level of ME. Perhaps the milder you are the harder it becomes to determine where these boundaries lie.

 

[PennyIA]

For me it is for relapses. I've experienced this 2 or 3 times already. When I'm relatively good I can exercise, my body is strong enough to do the dishes and have good posture. When I'm bad I can't really do these things. After I start to get a bit better again I start exercising again and it takes several months before my body is strong to do the dishes and other menial tasks

But that's what I mean by the fact that PWME tend to start doing more as they can without being told to start working on getting re-conditioned.

Not that you LOVE doing the dishes or anything, but the vast majority of us WILL start doing more as soon as we can.

I do the same during my remission period, I start doing a little more and then a little more ... but monitor my status and if I start feeling any symptoms of PEM, then I cut back... I don't know if it's enough to PREVENT relapses but I've only had 3 periods in 10 years where I was first housebound, then bedbound, then housebound, until I could do more.

That's all about managing the activity level and not over doing it. At this point, I'm not in 'RECOVERY' nor am I looking for long term reconditioning. I'm just PACING myself according to my NEW limits as the NEW limits become apparent to me.

 

[taniaaust1]

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?

Im going to say no. If you have ME and your body needs to rest, let it rest.. its far more harmful often pushing throu this and crashing and then ending up even being able to do less then before (so then at even more of a risk of deconditioning then previously)

 

[taniaaust1]

Deconditioning is more of a psychological issue rather than a physical one. The extreme case where a patient claims they can't speak and have to ingest food through a straw doesn't have a more severe form of this condition, and isn't in that state simply from resting too much; it's due to how that person is reacting to their ME/CFS symptoms.

Pacing/avoidance is fine as a general strategy, but it can be harmful when it becomes religion.

umm I wouldnt say deconditioning is a more of a psychological condition.

Deconditioning at one point cause my supportive muscles for my spine etc etc were weak, I did myself a back injury after a long bedridden state when I started to get more active again. I spent a week in hospital due to the back injury cause my body had truely become weak, it wasnt in my head that it was weak! and it wasnt in my head my injury due to not having strong supportive structures anymore.

 

[taniaaust1]

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:

300 steps a day comfortable = 2100 steps a week
600 steps pushed 1 day, 3 days bed 100 steps, 3 days 200 steps = 1500 steps a week

So staying in my limit keeps me fitter and is a better quality of life!

that's a great way of explaining and I too are fitter if I do less as to do the other just makes me even less able.

Before also getting the extra POTS diagnosis I kept raising the severe difficulties I had walking (talking inability to get across the room sometimes). Medical staff told me that this was fatigue. Whenever I got concrete legs I stayed in bed because it was 'fatigue'. It's not fatigue, it's blood pooling and can be improved by salt, cardio drugs and compression tights. It isn't improved by resting in bed (although sometimes with POTS it is so exhausting you need to lie down). I deconditioned more unnecessarily.

nods great comment. I think some who have improved by exercise have improved due to this very reason that they didnt distinigish what is coming from their POTS and what was from ME over doing it. For me the crashes feel different between a POTS crash and a ME crash but in someone less aware of their POTS or who dont know they have this, it could be easily confused.

 

[taniaaust1]

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.

Im sure it was ART (aggressive rest therapy) which lead to my 2-3 years full remission at one point.

 

[taniaaust1]

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.

I believe and have experienced that any person who's been long term bedbound is going to be deconditioned (this may be seen once the person starts to improve), its just the way things go, a person who has been stuck in bed for 9mths will be weaker and not as fit..

but yeah, agree totally that it is irrelevant that is happening as we need to do what we need to do to rest or have the ME get worst for many of us.

If someone had a broken back and had to remain unmoving for a couple of months in a bed due to this, im sure the major concern wouldnt be on deconditioning but rather on not making their back worst first.
.........

here's some food for thought, maybe for some slight deconditioning could be a favourable thing as it would make one less likely to want to try to run a marathon and hence crash afterwards. One thing about deconditioning if there is that it probably slows us down so maybe that could be good thing? (i thought i'd offer this alternative view).

I do get out of breath easily due to being unfit and that does slow me down (maybe it helps avoid PEM symptoms). (I could hardly do much more when I did work on my fitness thou eg only could do less then 12 seconds more aerobic exercise in one go when I had built up my fitness levels and was what I could say at the time fit).

 

[panckage]

But that's what I mean by the fact that PWME tend to start doing more as they can without being told to start working on getting re-conditioned.
.

It took me a long time to separate cfs and deconditioning symptoms. To be honest the kind of statements that fill this thread (strong comments without supporting evidence) confused me and are part of the reason it took me so long to figure out this kind of exercise is ok for me. I have had to push myself quite aggressively in order to counter deconditioning. PEM still occurs of course but luckily for me this exercise does not normally trigger it.

It would have been very helpful to me if I could have known about this beforehand which leads me to:

For me the crashes feel different between a POTS crash and a ME crash but in someone less aware of their POTS or who dont know they have this, it could be easily confused.

I believe that when I strength train I do get POTS 'crashes' I get really dizzy and have to lie down between exercises. For a while I was afraid this meant I would get PEM but it would rarely occur as a result.

@taniaaust1 Can you link to page that describes POTS crashes and the difference between CFS crashes. I've never heard of a POTS crash before

 

[Valentijn]

To be honest the kind of statements that fill this thread (strong comments without supporting evidence) confused me and are part of the reason it took me so long to figure out this kind of exercise is ok for me.

It's not just anecdotal patient reports here. It's also research using actometers showing exercise programs to result in no physical gains in patients, and numerous studies showing post-exertional abnormalities. Plus huge polls conducted by patient charities.

There is no evidence showing exercise to help ME patients, and a great deal showing that it does not help and causes physiological dysfunction lasting days or weeks afterward. Thus if your personal reaction is that exercise is generally beneficial, it's a good reason to suspect a misdiagnosis.

 

[panckage]

@Valentijn I fit the CCC perfectly. If exercise is of no help then why does Dr. Klimas say it helps some of her patients? It's pretty telling that no one bothered to address the link to her article in this thread. If you want to throw the baby out with the bathwater you are welcome too.This is my last post in this thread

 

[Valentijn]

If exercise is of no help then why does Dr. Klimas say it helps some her patients?

Her example of exercise "helping" a patient is regarding a woman living in an upstairs apartment who needed to be able to get down the stairs without immediately collapsing. After a year of focusing on the specific muscles needed for that, at the detriment of other activities, she was able to accomplish that goal.

 

[Mij]

I have had to push myself quite aggressively in order to counter deconditioning. PEM still occurs of course but luckily for me this exercise does not normally trigger it.

The thing is, you don't have to push yourself aggressively, and you shouldn't- it's counterproductive. You can counter de-conditioning by balancing yourself on one leg for one minute and switch to the other a little bit each day if you're able. Avoiding PEM altogether is the key.

Jenny TipforME explained it perfectly here:

300 steps a day comfortable = 2100 steps a week
600 steps pushed 1 day, 3 days bed 100 steps, 3 days 200 steps = 1500 steps a week

So staying in my limit keeps me fitter and is a better quality of life!

 

[barbc56]

So staying in my limit keeps me fitter and is a better quality of life!

I agree. It's also tricky as sometimes it's almost impossible to figure out that limit. There's often a misunderstanding that once you reach a certain level of activity, it does not necessarily mean you can go to the next level of activity as compared to other health conditions.

I read of one patient who was bedbound, not with mecfs, who would raise one arm at a time to write the letters of the alphabet in the air. When she could. She said it made her feel better and part of the benefit may have been distraction, but it did not mean with her health condition, she would be able to increase her activity and someday miraculously jump out of bed.

What I do not feel comfortable with is the notion that you just have to push yourself which may, however unintentionally, convey laziness. Everyone at one time or another has taken the path of least resistance, it's a human trait but not necessarily one found only in patients. But maybe it's easier to attribute these motives to a patient who has an invisible illness.

For example, for a while I had warm water physical therapy and it did seem to make me feel better. But there were more times than not I wasn't able to make it. So how much of this was a reflection of WWT vs. I was feeling better in the first place?

.I'm not sure if that this makes complete sense and it may look like Im contradicting myself. That may be because I'm having difficulty expressing this. I also may be venting.

Maybe others can explain this better.

 

[PennyIA]

For example, for a while I had warm water physical therapy and it did seem to make me feel better. But there were more times than not I wasn't able to make it. So how much of this was a reflection of WWT vs. I was feeling better in the first place?

.I'm not sure if that this makes complete sense and it may look like Im contradicting myself. That may be because I'm having difficulty expressing this. I also may be venting.

Maybe others can explain this better.

I'm right there with you. I suffer from relapse/remitting and there's no guarantees that what seems to help will help after my next crash. I might go into remission for no other reason than just I was already in an improvement phase without realizing it.

Chiropractic treatment, methylation supplements, diet, pacing and Epsom salt baths SEEM to help manage my symptoms.

I know I've been having one really weird symptom that developed into a serious crash about 2 years ago. I ended up stopping all treatment (well, but for the diet & pacing) because I didn't know if I was making myself worse or not... so removing treatment felt like a safe thing to try. I did get better later. Was it because I removed treatment? No idea.

I've had two times where those symptoms have returned... each time I've stopped treatment and so far, I haven't completely crashed. Still doesn't mean that my treatment results in those symptoms. Still doesn't mean that removing treatment lets me heal... there's only circumstantial evidence with nothing that I know to do to test or otherwise to try to sort it out further.

 

[Mij]

@barbc56 I've stayed at the same level (where I don't get PEM) for the last 12 years. I have not been able to move to a higher activity level.. I've tried to and- no way. I've gone through mini set backs due to menopause and immune activation so I'm very careful to do less for now just in case something goes wrong. I feel as though my body is telling me to be very careful. I think I've reached we call "plateaued" at this point. I don't feel I will improve beyond this point unless I have treatment (anti-virals etc).

I may have had a better chance many years ago when I was improving, but I ruined all that by exercising myself to PEM for years. I plead ignorance though because I didn't know what it was doing to me

It is very tricky for those who dont' have a baseline and they should not push. It's difficult to explain this to a doctor and I'm so tired of being asked if I'm feeling better

 

[taniaaust1]

I believe that when I strength train I do get POTS 'crashes' I get really dizzy and have to lie down between exercises. For a while I was afraid this meant I would get PEM but it would rarely occur as a result.

@taniaaust1 Can you link to page that describes POTS crashes and the difference between CFS crashes. I've never heard of a POTS crash before

Unfortunately I dont know of such a page, Ive just had to learn throu my own experiences with my different crashes and to add to the the confusion some of the symptoms are the same for both but actually feel different eg for example a headache but they are of a different type eg my POTS symptom headache is more like a whole head pressure thing - feeling whole head will explode, where my ME headache is often more localised in spots of my head eg frontal or temple headache.

Another thing Ive found is "too many" POTS crashes can lead to a ME crash.. I think it may be cause the POTs crashes do put a lot of strain on the body.

 

[ryan31337]

There is no evidence showing exercise to help ME patients, and a great deal showing that it does not help and causes physiological dysfunction lasting days or weeks afterward. Thus if your personal reaction is that exercise is generally beneficial, it's a good reason to suspect a misdiagnosis.

I appreciate a lot of us have strong feelings about this (and rightly so), but suggesting misdiagnosis just because you don't always react badly to exercise is going a bit far. There's too much heterogeneity for that to apply, both in the nature of ME/CFS and what people define as 'exercise'. Yes, massively overreaching and giving yourself PEM is never appropriate, but by suggesting you can never tolerate any exercise at all is getting as divisive as saying you must do GET to improve.

My personal experience & opinion is that there are periods when you can rest too much or too little. There are periods when you can exercise too much or too little. Figuring out with any degree of accuracy what state your body is currently in is half the battle unless you are severely ill. I am lucky enough that I usually return from moderate to mild after a prolonged crash and get to a state where regular exercise is very beneficial to me. I realise that not everyone is so lucky and wouldn't claim that everyone will have the same experience.

I think adjustments for this variable state (variations from both long-term remission/relapses and short-term crashes) and the proper personal tailoring of exercise are considerations that are mostly lacking from the studies & polls depicting exercise as harmful 100% of the time. To me its a full-time job just trying to optimise activity levels and even then I probably get it wrong half the time.

 

[halcyon]

I appreciate a lot of us have strong feelings about this (and rightly so), but suggesting misdiagnosis just because you don't always react badly to exercise is going a bit far.

I don't think it's going too far when the most well respected definitions of the disease literally define the presence of the disease by the adverse reaction to exertion (not even exercise) whether it be muscle weakness in the Ramsay definition or PEM/PENE in the CCC/ICC. These are required signs/symptoms for diagnosis of ME. I would argue that if you've reached a point where exercise or exertion is no longer detrimental then you've achieved remission of ME and any lingering problems represent a comorbidity or a missed diagnosis. The return of adverse reaction to exertion would signify relapse, and importantly these are often found to occur after overexertion.

 

[ryan31337]

I would argue that if you've reached a point where exercise or exertion is no longer detrimental then you've achieved remission of ME and any lingering problems represent a comorbidity or a missed diagnosis. The return of adverse reaction to exertion would signify relapse, and importantly these are often found to occur after overexertion.

I understand where you're coming from but I think the illness is less black and white in reality. This is why I tried to emphasise the necessity of understanding your current state to interpret your response to exertion at that point in time.

If everything was so clear-cut I would be in remission from ME because I can now walk for 5 minutes a day without PEM, whereas 6 months ago I couldn't?