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Pacing and Rest

Discussion in 'Lifestyle Management' started by Jody, Jun 6, 2009.

  1. Jody

    Jody Senior Member

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    Hi

    Building rest periods into the day makes a big difference for me. The difference between having a crash or not.

    Envelope therapy is useful. I try to stay within my energy envelope, with any increases starting in very small increments.

    At one time, I began exercising by doing two crunches, then waited two days, and did it again. Over the next few months I was able to increase quite a bit without ill effects. Eventually I was doing 40 minutes of basic yoga and pilates and other stretching exercises, and 20 minutes of 3 lb. dumbbells. And I was going for 2 half hour walks every day.

    Mind you, that was a few years ago, and came to a halt after a crash. (I'd gone away for a week and spent the next 2 months wiped out.)

    I have had to start over more times than I care to count but the point is, it works.
  2. Cort

    Cort Phoenix Rising Founder

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    Thats good news because the absolute thing for me has been strength exercises like crunches but I've never tried starting out at such a low point. Maybe that's what I need to do.

    Dr. Jason's presentation about the energy envelope training at the IACFS/ME was really startling; it can make a huge difference in the number of symptoms people have and their energy levels.

    You can check it out here - I was really suprised.
  3. Jody

    Jody Senior Member

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    It sounds ridiculous to start so low, but it has worked for me more times than I can count. (I've had to start over often, due to crashes but the crashes were not due to exercise, they had other causes.)

    I discovered this worked for me simply because I was unable to start out at a higher level. It would level me.:)

    It's like the body allows a little wiggle room. If we take that little margin, and increase just that tiny bit more without taxing our body (and not right away, sometimes many days in between are necessary, depends on how your health is at the time) the body can go with it. And if you do this long enough, you can (sometimes) actually get somewhere.
  4. Cort

    Cort Phoenix Rising Founder

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    Right now I'm living proof of what ignoring my energy envelope can do. I'm sightseeing in Washington DC - lots of walking - you have to walk alot in these Eastern cities. It must be tough for ME/CFS patients here.

    Anyway I've done very well but I've clearly stepped over my boundary. My muscles feel hot, tight and constricted and my breathing is short and interrupted. Still out I go for one more day! - and today I resort to caffeine - a big no no for me.

    I'll recover when I get back home ;)
  5. Jody

    Jody Senior Member

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    Any chance of taking small breaks? 5 or 10 minutes sitting or lying down in a quiet place? Our ultradian rhythm is such that if we can take 20 min. every 2 hrs. to rest, the body responds (that's the theory) and doesn't get so worn out. I followed this for awhile when I was extremely depleted and it made a difference. I was surprised.

    If 20 min. every 2 hrs isn't possible while you're away, even smaller breaks can help. Nothing is too small to make a difference.

    That is probably the main lesson I've learned from having CFS.

    Instead of caffeine, what about more protein? Keeps the blood sugar steady for longer, without the spike and drop. Doesn't tax the adrenals like coffee.

    A piece of chicken, a burger without the bun, even a few bites of something can make a difference within 10 - 20 min.
  6. Cort

    Cort Phoenix Rising Founder

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    Very interesting theory! My experience is that the more activity my body gets the more 'jacked up' it gets. It's like a motor gets engaged and has a hard time releasing and the harder you push the body the higher gear it gets stuck in. Maybe periodically giving it time to unwind and kind of return to a better functional state would work.

    Pushing it until it crashes doesn't work obviously - that seems to leave that motor still running even as there's no gas in the tank. Stopping the process before it has a chance to go seriously off kilter - that seems like good advice.
  7. Jody

    Jody Senior Member

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    I have an article on Ncubator.ca about the Ultradian cycle that touches on all this somewhat.

    The body likes to take breaks. It's hard-wired to do so. If we push it too hard for too long, especially when our health is fragile, it will get unpleasant with us.

    The small breaks revitalize our bodies for the next 2 hrs, and so on. :)

    I see a similarity between this and the idea that smaller more frequent meals are healthier.

    The body, apparently prefers sprints to marathons in terms of meals and rest.
  8. Jody

    Jody Senior Member

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    Was talking (by email) to a friend in the UK who has CFS, or as they call it, ME, or myalgic encephalomyelitis.

    She says in England they have treated this condition like a bona fide illness for many years. And she says that the usual treatment plan is one that is light on the drugs and heavy on pacing and rest.

    She says that she has built into her day 4 half hour rest periods, and has been doing this for some time. Just from this technique, she says her energy level and general well-being has increased noticeably.

    I know that there are supplements and dietary things that have been essential for me to improve, but I also am aware that resting enough and pacing myself, can mean the difference between being functional and feeling okay, and ... not.
  9. Cort

    Cort Phoenix Rising Founder

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    ME/CFS Patient Lauds Bruce Campbell's Program

    Lisa Johnson was a marathoner and type a personality before she hit the wall with ME/CFS. that didn't stop her personality traits at all - she just funneled them into different arenas ( exhausting herself in the process). That is until she met Bruce Campbell and his CFIDS self-help website and course.

    Her blog appearing on the " Bringing the Heat" blog tells of her transformation from a typical type A overachiever to a ( more or less) model CFS patient. Check it out at http://aboutmecfs.org/blog/?p=724
  10. jenbooks

    jenbooks Guest

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    Cort....YOU DA MAN!!!

    Not only is your forum's software so easy to use...and the forum itself polite and informative...but I have learned more here in 2 weeks than I did in the entire time at other CFS groups...whether on Yahoo or Prohealth.
  11. Cort

    Cort Phoenix Rising Founder

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    You know JenBooks in all honesty (and humility) the same is true for me! ;) I've learned an enormous amount here and it's going to help quite a bit on the website - it's opened up so many different avenues that I didn't even know existed.

    You can really thank Aftermath. After my experiences on forums elsewhere I kind of thought of them as messy, angry places and I was really not interested in having one - but he pushed and pushed and so here we are...and I'm glad he did.

    Thanks! :)
  12. CJB

    CJB Senior Member

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    Graded Exercise will benefit us all....

    ...when we're significantly recovered.

    Something I learned from the yoga classes I took was, "when you're sick, rest."

    As long as we're ill, trying to engage in any kind of graded exercise program is doomed. It may take awhile, but eventually it catches up with you. Lord knows I've tried. My history has been illness/accident/surgery and I'm down to zero functioning. A walking program that increased a little bit each day got me back on my feet. It's been a struggle for me to abandon that concept and latch on to the "when you're sick, rest" guidance.

    I've failed over and over and over with any kind of formal exercise starting with yoga, walking, mini-trampoline, etc. no matter how small the starting point or how little I tried to increase. (Mini-tramp for example. Start with 1 jump and add 1 jump a day. It took about 3 weeks, but I crashed huge.)

    Instead of growling at my doctor when he brought up GET, I gave him the litany of things I had tried and the inevitable crash. I rehashed my previous experience in recovering from major illness and injury and how this time it just didn't work. I told him about my Jazzercise addiction and riding my 10-speed to work before I got ill. Explained that I was a huge proponent of the benefits of exercise. He would give me a strange look, talk about his worry about deconditioning, etc. I told him I was worried too. You can't know anything about health to not be worried if you can't exercise about what's happening to your heart, brain, lungs, liver, etc. We had this conversation nearly every visit, and I told the whole story each time.

    The term "pacing" is right on the money. It's the strategy that's helped me the most and has allowed me to have some quality of life. At some point, a few years back, I instituted the "leave me alone between noon and 4:00pm" rule. told my friends/family that I was resting and wouldn't answer the phone. And I stuck to it. That changed everything for me. Eventually I was able to actually nap during that time and when I woke up from the nap, I had another hour or so of time I could function. It was just the little bit of structure I needed.

    Just my two cents.
  13. talkingfox

    talkingfox Senior Member

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    I think I have the hardest time with this aspect of the disease.

    I'm an ex hardcore gym rat (power lifter) and moderation doesn't seem to be in my lexicon as far as the gym is concerned.

    I would love to figure out a way to be in the gym and in my beloved weight room without hurting myself. I guess it's maybe a longing for a familar routine where I felt in control of my body or something....
  14. George

    George Guest

    Ditto

    Once I started "pacing" 30 mins doing and 30 mins resting I got a lot more out of my day without the bad crashes. And I have to stick to it. Even a couple of 35 mins doing without equal resting and I pay for it!

    Pacing has even helped me get just the tiniest bit better. Some times I think they should name this illness Chronic Patience Syndrome.
  15. shrewsbury

    shrewsbury member

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    Pacing Helps ME

    This post by Colin Barton came on co-cure on Dec 8 09

    NOTE: I know nothing about Colin Barton or UK charity Action for ME. It might be interesting to look up the booklet on Pacing mentioned at the end to see if it could be useful for others. What I always want is a list of research supporting all statements. I wonder if the survey was written up and submitted to any medical journals?

    I like that they recognize that 'activity' includes thinking and emotions, as well as any movement. My analogy has been that my rechargeable battery that provides energy for all thinking, moving and feeling, charges very slowly to an amount less than full, and is used up quickly by any of the 3 activities.

    I'm a bit concerned about these statements:
    >enables them to plan in a positive way how to use energy, maximizing what they can do with it.
    >Over time, when the condition stabilizes, patients can very gradually increase activities to work towards recovery.

    They seem to imply a linear ability to progressively improve. Wouldn't that be wonderful! While pacing is one of the most effective tools in my arsenal, the nightmares to me are all the unknown-cause relapses, and the plateaus of health that nothing so far has brought me past. While pacing has helped me live a bit better with this disease, it does not deal with all symptoms, and has not led to recovery. And I have not seen any research that would substantiate such a claim.
    [/LIST]

    (my bolds)
  16. Min

    Min Senior Member

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    Many PWME are more than a bit concerned about Colin Barton and Sussex & Kent ME/CFS Society's presenting their view that M.E. is a psychological illness treatable by exercise.

    The survey was biased in that did not permit those who have been made worse by graded exercise to say so.


    Action for ME (and their sister charity Action for Young ME) are the only UK M.E. charity that supports the current NICE guidelines; these permit only psychological 'treatments' for M.E. and that discourage many tests on the patient that would prove we have a physical illness. All other UK ME charities condemn the NICE guidelines as unfit for the purpose.

    They are the only UK adult M.E. charity whose only members in law are the executive. All other 'members' are in law only subscribers to their magazine, and have no voting rights or AGMs.


    AfME have supported the PACE and NICE trials that have cost the UK taxpayer 2.7 million. These are 'studying' the psychological treatments used by our CFS clinics on PWME. The Oxford criteria has been used to select patients and this excluded people with neurological M.E. whilst including people with mild depression.


    AfME have not funded any biomedical research into ME although they pay lip service to it being needed. They seem to me to be saying one thing whilst doing the opposite - namely working with and supporting the Wessely school of psychiatry.




    (As far as I can see pacing is merely common sense that helps us get through our day, it does not cure us and does not need huge amounts of money thrown at it that could be spent on biomedical research.)
  17. shrewsbury

    shrewsbury member

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    Thanks so much Min for filling me in on the organization. That's why they made those statements I was concerned about!

    Quite subtle spin, actually. I know nothing about PR, but in looking at the steps, it appears that it could be textbook prototype spin:

    1. Garner support by saying truthful things
    a) Say something that makes sense - "pacing can help"
    b) Throw the dog a bone - "'activity includes thinking and emotions'"

    2. "Massage" some "evidence"
    a) Provide what at first glance seems to be valid support - here the survey
    b) Omit necessary info - here, that there was no option in the survey to say that pacing did not help????!!

    3. Slip in statements unsupported by the "proof" provided, hoping that the non-critical or tired reader will not notice that the preceding info does not support the conclusions jumped to - "when the condition stabilizes, patients can very gradually increase activities to work towards recovery." (Don't we all wish we could!)


  18. Carter Burke

    Carter Burke Guest

    Pacing works great for me, but I didn't really appreciate how much rest I needed to stabilise my condition.

    (I had a load of nutritional deficiencies I needed to treat as well - they've probably helped detox and helped get my immune system working.)

    My pacing means total, complete rest as much as possible. I'm usually lying down with my feet up. After a year treating all the deficiencies I knew about - and taking general supplements; detoxing with a home sauna; cutting out gluten, dairy, lectins, etc. - my symptoms stabilised and cold/viruses stopped knocking me out quite as much.

    Another year like this and my activity's doubled, whilst symptoms have stayed minimal.

    Pacing is like graded activity, just at the cell's own pace. (My first year, my activity only improved, long-term, by about 1 additional step a day. Unbelievably slow - about 0.1% improvement/day - but over 2 years, with a gradual exponential recovery, that's gone from averaging 1,000 steps/day to 2,000. Which is a doubling in activity whilst staying symptoms free... I'm not sure many people appreciate how slow recovery has to be for it to be consistent. As soon as you get symptoms, you're overdoing it, basically.)
  19. Robin

    Robin Guest

    Carter Burke, that sounds a lot like Bruce Campbell's protocol, minus the nutritional/detox steps. The emphasis on avoiding overexertion, committing to regular rest periods, and gradually adding activity as your body tolerates it, is what I'm trying too. I've been doing pacing for four months now and it's helping me out of a very severe relapse. There are days that I get setbacks for no reason but, like Campbell says, if all else fails just go to bed!

    I'm going to get a pedometer -- that's such a useful way to measure activity level.

    It seems quite different than the above mentioned UK pacing, with its claims of linear improvement toward recovery.
  20. Carter Burke

    Carter Burke Guest

    Actually I've been meaning to print this out for AGES!

    Here's my pedometer steps/day measured for coming up to 2 years.

    [​IMG]

    You can see, day by day, it's anything but linear. But what's fascinating for me is that the trend line in the middle has actually been incredibly consistant. (Starting off just above 1 additional step/day, and slowly going up to 1.5. If fact the rate of recovery has been more like 1.3, consistently, with a jump half-way through due to Glutamine and BCAAs.)

    And what really surprised me is that the upper and lower limits on my typical days seem to have followed this trend pretty accurately too. (So it's really NOT representative of fitness, it's representative of something happening at the cell level.)

    You can see at the beginning, I made the rookie mistake of wearing a pedometer and semi-consciously trying to further my steps/day, like a typical Type A personality... I got to almost 2,000, and then spiraled back down over the next few weeks. (A classic example of poor pacing - even though this was a LONG way from actually being fatigued from exercise. I wouldn't have even noticed the over-exertion and fall had I not been measuring steps.)

    Then I felt better around day 95-100, and did the same thing again - I think after that I learned that I had a boundary I had to stay within to make consistent improvements.

    But interestingly, even though there have been viruses, periods of stress, periods where I've been fatigued, where I've exercised, where I've done too much, etc. the longer-term trend, of 1.3-1.4 additional steps/day, hasn't really changed much.

    An interesting point is around day 380, where I added (from my own research into sports science and nutrition) 15g L-Glutamine, 10g BCAAs and 1-2g Malic Acid.

    A problem up until then was that going towards my upper limit of daily activity - especially a few days in a row - would often bring on muscle soreness/fatigue in the thighs/knees. And this in itself is a sign of pushing - it's giving the body more to deal with in repairing tissue and adding to the free radicals and waste products the body needs to get rid of.

    (In fact, by now, as I wasn't getting much central fatigue, I'd use muscle soreness as a barometer of whether I'm pushing too much.)

    So what do athletes use to combat this? L-Glutamine and Branch Chain Amino Acids seemed popular with bodybuilders for avoiding these same symptoms. (I since learned they're almost always low in CFS. In fact, when you need to use/repair muscle tissue, the body's stores of L-Glutamine are used up quickly, and Glutamine's not only a semi-essential amino acid used by muscles, it's also important for the immune system...! So low Glutamine in itself could explain both over-training in athletes and why we get weakened immunity when we push ourselves physically with CFS. I think there's a strong overlap.)

    So yeah, I got a sudden jump in my trends almost as soon as I added those supplements.

    You can also notice now I can have days where I push to almost 3,000 steps, and unlike the earlier days, that doesn't result in me going downhill for the following days/weeks. So there's obviously a much greater capacity for work now.

    (Worth noting, steps are only a part of the picture. I'm also driving and going out much more frequently and for much longer stretches now. I'm doing some basic conditioning exercise now too, and obviously using my chart to ensure I don't push.)

    VERY helpful! It's taught me about not only pacing, but pacing very specifically to my own condition and the nature of my recovery. So I'm sure other people will find their trends are completely different.




    PS - Should also mention, BEFORE I started with the pedometer, I'd been taking all the supplements Myhill recommended and had my activity down to a bare minimum for about 3 or 4 months at least. Probably averaging about 700-800 steps/day. I started with the pedometer as soon as my symptoms had eased up a bit and I felt like increasing activity a bit... I think the stabilisation phase before was very important though.

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