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

Discussion in 'Lifestyle Management' started by Becky Ray, May 13, 2016.

  1. Becky Ray

    Becky Ray

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    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?
     
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  2. lnester7

    lnester7 Seven

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    Yes. Deconditioning will be your worst enemy. I agree you need the time you need to recover, at one point I was in bed for 2 months which made my OI so worst and I am still recovering. I think try to do something while in bed stretching or whatever you can. Doesn't have to be crazy. even if you have to add even more rest.
     
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  3. daisybell

    daisybell Senior Member

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    Maybe 10 minutes is too short? I think if you are up and moving around then you should also rest as much as you feel you need. Being bed-bound is entirely different I think.
     
  4. Mary

    Mary Senior Member

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    It sounds like you are pacing yourself with your hourly resting, and then quite likely suffering from PEM (post-exertional malaise) when you have to spend hours in bed. For me this is the nature of CFS. If I try to push and do things when I'm exhausted, I am much worse off. When I crash (PEM), I used to have to spend 3 days in bed without doing anything (apart from opening a can of soup or going to the toilet) in order to recover. I now recover in about a day, partly through various supplements and partly probably because I don't crash as badly as I used, because I've learned my limits, which are roughly 3-1/2 hours of light activity a day. Pacing would help and I find it almost impossible to do if I have energy.

    We are all taught that exercise is our friend; unfortunately the exact opposite is true with this awful illness. I've learned that if I start to get tired, I've already overdone it. I need to stop before I have any fatigue; otherwise I'm in trouble. So in terms of activity vs. rest, I spend much more time resting because I'm forced to, and I gain nothing when I try to push past fatigue. Our bodies just don't work like healthy ones. There are many people on this board who have relapsed badly when they pushed themselves past their limits.
     
  5. barbc56

    barbc56 Senior Member

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    I believe deconditioning can become problematic with mecfs and is something to keep in mine. But it only plays a small part in our inability to exercise and therein lies the problem (as well as a heap load of frustration). The question is how to balance the two so it's optimal to your health.

    As @daisybell said being bedbound is a different situation so I'd think your present level would be a factor.

    But people in comas and those who are bedbound from other health conditions receive physical therapy to counter the detrimental effects on the body.

    I wonder what types of PT are used for these patients and if they are applicable to us.

    It seems we only get the advice of "get out of bed" and that's the only goal without any intervening strategies to facilitate that goal or even recognizing that the goal for some is unrealistic

    As I said, quite frustrating!

    EDIT

    As @Mary pointed out rest is also beneficial. Maybe if they found out why it helps, would be important information.

    When someone is doing cognitive tasks, taking a break is often recommended. This is for those who are healthy, so I think it applies even more for us.

    Are there any medical centers such as Stanford fatigue clinic looking into this question yet realizing the limitations of me/cfs. I would think they do but am not that familiar with the program. Maybe I should do this.
     
    Last edited: May 13, 2016
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  6. panckage

    panckage Senior Member

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    This has been very true for me. I would say at the beginning of the illness is the most important time to maintain your strength (i think isometric exercises are probably the easiest for us) . The reason being is that it takes less energy to maintain our strength than to lose it and have to rebuild the strength again.

    I'm sure there are some people with CFS who have enough energy to maintain their strength, but will not have enough energy to rebuild it once they lose it

    As someone with mild CFS (60% normal) after a few years the deconditioning was the same or more physically debilitating than CFS for normal activities of daily living
     
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  7. barbc56

    barbc56 Senior Member

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    That’s interesting. I wonder how many others this applies to? It does make sense that this could happen to those who are less affected, though 60% isn't to be dismissed as not disabled as well as those who are at a higher level.
     
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  8. panckage

    panckage Senior Member

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    I guess most PWME. I mean I worked 30hr/week as a teacher and that's probably better condition than most people in this forum, right?

    I think the question for most PWME is whether or not they are physically able to do enough exercise in order to prevent deconditioning
     
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  9. barbc56

    barbc56 Senior Member

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    I may be misunderstanding but you're a six and working as a teacher or you were a teacher?

    I need to look at the scales again as I found the last one I looked at didn’t actually apply to me. I am probably hovering around four, atm, if I even remember the scale correctly but I'm also having some other health issues. Maybe there's a new scale? If someone could point me in the right direction.

    I was a teacher so that's why I'm asking. It can be such a draining job and it did me in that last year. In fact looking back I probably should have taken medical leave earlier as I think I damaged my health even more.
     
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  10. justy

    justy Donate Advocate Demonstrate

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    Deconditioning is not an issue if you are mode/severely affected - how can it be if you simply CANT exercise AT ALL? Im at around 30% on the Bell scale and just getting up and down the stairs, walking around in the house, lifting things up IS like exercise to us. If I tired to exercise, even stretching to stop deconditioning then I crash - even two stretches a week is too much.

    I don't really thinbk deconditioning is such a big deal. Last year I spent 6 weeks doing NO walking at all outside, staying in a small apartment my no of steps dropped massively. I used my wheelchair every time I went anywhere. by the end of it my thigh muscles felt weak when I tried to walk - about a week later, when I resumed my normal routine, they were back to my normnal.

    I have had good days and weeks over the past 7 years and even though I have lost some strength I was soon able to do much of what I used to do.

    Back to the OP - what level of ability are you? it may be that 10 mins is not enough. I don't think you can have too much rest - you have to follow your body...having said that I do have to keep a balance between not enough and too much - but at my level that's tricky to determine.
     
  11. TiredSam

    TiredSam The wise nematode hibernates

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    It's a no for me. At the level I'm at, it will be a long time before I have to worry about deconditioning, and rest is more important.

    Everyone is different, but for me I need to rest for 25 minutes every 2.5 hours. I set an alarm clock and get up again 25 minutes after lying down. This is the ideal situation. I should lie down before I start feeling tired, and should not be so tired that I fall asleep.

    If I am tired before I lie down, it's usually because I've gone too far over my 2.5 hour limit, or because I've been too active in the previous 2.5 hours. In that case I don't set the alarm clock. If I feel fine again and am awake after 25 minutes I get up (I can tell by the church clock in the village that strikes every 15 minutes), but if I've drifted off and fallen asleep then I wait until I wake up without being interrupted by the alarm clock. There's no point, if I try go get up when the alarm clock tells me I'll just feel like crap anyway. In this situation I often sleep for 1-2 hours.

    Nothing's more important than rest for me, it's the only chance I have of maybe improving my activity tolerance in the long term. I don't worry about deconditioning (I'm not sure anyone should unless they're bed-bound for long periods), and wouldn't even think about exercising. The next exercising I will do is slightly increasing the activities of daily living (doing a supermarket shopping trip, housework, prepare a meal, play music ...) exercise is a few steps beyond those things, and if I can't do those without crashing I'm certainly not going to risk exercising.
     
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  12. alex3619

    alex3619 Senior Member

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    This is not a straightforward question. Every answer needs caveats.

    For some of us its impossible to have too much rest. Rest is the only viable option. This is likely to be the case with the most severe patients.

    For others it might be important to exercise, not just to avoid deconditioning but to increase strength etc. so as to have more capacity to cope. This can be done but the rules are very different from regular exercise. Several research groups in the US are trying to figure this out, and one of the main rules so far is to insure that the heart rate does not rise above your anaerobic threshold. We have to exercise with a low heart rate, and often this means exercising lying down.

    However a great number of us have a different answer again. Can we have too much rest? Yes, pacing is about working to maybe half your capacity, but you don't want to do too little. The issue here is that there are so very many things we want to do, and exercise uses the energy to do them. We do not recover that energy quickly. So its better to gently push your desired activity, though that could be less desirable like washing dishes, rather than exercising. Such activities can also include work.

    In my experience patients typically do more as they improve, and do less as they get worse. The biggest issue most of us face is not avoiding exercise, its trying to do too much. Life puts demands in front of us and sometimes we think we need do too much as a result. This is even more likely if you do not learn how to pace, but happens even with long term pacing experts.
     
  13. meandthecat

    meandthecat Senior Member

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    I go horizontal as soon as I get in from work, even negative, head down..feet raised, and stay there till I have to move. I have polarised my life, I work full-time, pretty full-on but within an energy envelope and rest full-on outside of that.
    It's not a choice that sounds right but it works on so many levels. If I try something in-between I get worse. Stamina is an issue, cognition is improving but strength has returned. I do a physical job.

    I sail close to the wind, am constantly managing PEM and lurch toward brain death by the end of work, but I am making steady, if slow, progress and when you are over 60 the window is closing rapidly. It's not how I envisaged my life but it's better than it was.

    In the early days I was sleeping 16hrs a day, now I sleep much less but still rest alot. It's complex and de-conditioning doesn't seem a sophisticated enough theory to address the issues.

    I listen to my body, it's more worthy of trust than most doctors.
     
  14. Living Dead

    Living Dead Senior Member

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    Listen to your body and you'll know what's right for you.

    Too much inactivity could give deconditioning, however, with CFS normally more rest = more energy = less inactivity. And 10 minutes every hour or two is nothing. Even if you rest several hours a day I would say deconditioning isn't worth thinking about.

    Have you considered resting more often even when you don't have to, to see if you don't get so many days where you end up resting more anyways?
     
  15. Valentijn

    Valentijn Senior Member

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    Forced bed rest due to a bad OI flare leaves me stronger afterward, not weaker. Whatever happens to us from ME/CFS is having a completely overwhelming impact when compared to deconditioning. And the actual research regarding deconditioning in healthy people suggests it is rectified very quickly, typically in a matter of weeks.

    My general impression is that deconditioning is such a minor factor in ME/CFS that it's not worth worrying about until we're cured. And then we'll simply start doing more because we can, without needing to carefully schedule little increases in activity, or cutting back on other activities, or suffering pain and exhaustion from it.

    Deconditioning is the bogeyman the psychobabblers use to scare patients, mislead the public, and maintain control. It's really not something we should be taking seriously until our disease is cured or completely in remission.
     
  16. justy

    justy Donate Advocate Demonstrate

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    I couldn agree with this more. the ONLY thing I have ever found that consistently helps me to function is MORE, not less rest.
     
  17. Mij

    Mij Senior Member

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    Horizontal preemptive resting works best.
     
  18. mango

    mango Senior Member

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    I totally agree with Justy and Valentijn's comments.
     
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  19. panckage

    panckage Senior Member

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    So what you are trying to say someone like Stephen Hawking who can barely move at all has a body that is not deconditioned? Err... ok :rofl:


    @barbc56 I'm a high school substitue teacher. There is no way i could be a full time teacher or teach elementary school kids :p
     
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  20. justy

    justy Donate Advocate Demonstrate

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    What I am saying is not that deconditioning isn't real - but that it isn't something worth worrying about if you are mod to severely affected - it doesn't make that much difference to your functioning at that level and to try and not get deconditioned would only make you more ill - I thought that was self evident.

    Stephen Hawking is not sick, or any more sick BECAUSE he is deconditioned - he is sick because he has MND - not being able to stop the deconditiong doesn't make his health issues worse - my chance ot have a little laugh at you?
     

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