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Extreme Pacing

Discussion in 'General Treatment' started by Sammy1, Aug 9, 2013.

  1. Sammy1

    Sammy1

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    Has anyone exercised extreme or very strict pacing over a long period of time (minimum 6 months)? It would be interesting to know about your experiences; good and bad, side effects etc.
  2. peggy-sue

    peggy-sue

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    To my knowledge there are no "side-effects"or bad experiences from pacing....
    apart from the general bits along the lines of:
    the laundry sits in the machine for 4 days going mouldy because I'm not fit to hang it up
    I pong a bit because I've not had a shower for 6 days
    The cutlery is rusting because I've not emptied the dishwasher or remembered to open it as soon as it finishes.
    I'm bored rigid.:whistle:

    I don't pace strictly, but I have been doing my "own version" for about as long as I've been ill (11 years).
    I cottoned onto it fairly quickly as the only way to cope.

    I divide what I do into "activities", some are weighted more heavily than others obviously, but in general, I try never to do more than 2 "major" activities a day.
    Some days, I do 3, but then I have a couple of days when I do only one or even none to compensate.

    A major activity would be to hang the laundry; empty the dishwasher, be taken to a high street for a little browse of some charity shops; have a shower; be taken to the supermarket; cook a meal or (fortnightly, my only social life) meet a friend for lunch in a local cafe.
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  3. ukxmrv

    ukxmrv Senior Member

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    Maybe what you call "extreme pacing" is what we used to call ART or aggressive rest therapy way back in the 80's?

    To get over a particularly bad slump one would do as little physical activity as possible. This led to less viral symptoms and less PEM for me. Not much of a life, one did little but better than deteriorating further. ART helped me recover from a terrible bout of flus one year that went on and on. I was able to get back to my pre-flus level eventually through resting.
    ahimsa, Sparrowhawk, Sammy1 and 4 others like this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Do you have a heart rate monitor? It is invaluable for pacing as you can see when you hit your anaerobic threshold and know to "stop right now."

    Some here have done extreme pacing with good success. It seems to--in the long run--allow you do do more.

    Best wishes,
    Sushi
  5. peggy-sue

    peggy-sue

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    I call resting "positive inaction". It sounds more like doing something.

    It can make it easier to bear when you know you're "putting the ability to do something nice later" away in a sort of bank.
    It even has realistic interest rates... and you can trust it as much as you can banks! :devil:
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  6. Plum

    Plum Senior Member

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    I would love some more info or a link on hot to use the heart rate monitor to my benefit? Is there a general heart rate to stop at or do you have to find yr own?

    My experience isn't beneficial as I only extreme pace when I have a crash or when I have to do something like go to the Dr. I have seen some clips on youtube about the nature of us resting and how for some listening to music or watching telly is not resting. Apparently it is beneficial to do absolutely nothing for months on end - my personality can't cope with the idea!
    rosie26 likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Plum,

    To use an HR monitor well, you need to get at least a close approximation of your anaerobic threshold. You can be tested for this at a place like the one discussed in this article: http://phoenixrising.me/archives/17902
    or you can calculate it based on your age (I don't have the formula at hand, but it is here somewhere and maybe others will see this and supply it).

    You don't necessarily have to do nothing for months--unless it is a really severe crash--but rather taking a rest with your legs up (or lying down) when you are doing something that is taking you over your AR. I am lucky to have a very low resting HR so I have a lot of wiggle room before reaching my AT. But wearing an HR can be surprising in that things you might not guess may be taking you over your AT into the most inefficient type of producing energy. The more time you spend over your AT, the more consequences you are likely to have.

    Sushi
  8. lnester7

    lnester7 Seven

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    Formula: (220-Age) * 60%. If 60% is too much (you are bed ridden) you can start with 50% and go up as you feel better.

    (220-Age) * 50%

    Example : You are 30 years old it would be= (220-30) * 50%
    220 - 30 = 190
    190*0.50 = 95bpm

    You would have to keep your HR under 95 beats per minute.
    Sammy1, alice and Valentijn like this.
  9. Esther12

    Esther12 Senior Member

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    I'm a bit cautious of all different techniques for managing symptoms, and would only do it if it meant that you felt happier doing it.

    I don't think that it's worth making your life more of a chore on the assumption that being really strict will lead to real improvements in your health. It seems that different people find different things helpful, and that it's probably best to just play about for yourself. Best of luck.
    peggy-sue likes this.
  10. CFS_for_19_years

    CFS_for_19_years Senior Member

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    I listened to Dr. Bateman's most recent webinar on post-exertional malaise and she said you should only do activities that you can recover from by the following day. If it takes you more than one night of rest to recover from an activity, you have over-exerted yourself. You can do this by trial-and-error or use something a bit more concrete like the heart-rate monitor or maybe use both methods together.

    Here's the link to Dr. Bateman's webinar:

    It's research-oriented, but there are some practical applications.

    If I recall correctly, Dr. Bateman's definition of rest was lying flat, eyes closed, and no distractions such as music or television. She did give some examples of patients who would plan 15 minutes of activity, then 15 minutes of rest, and so on. She showed an example of one patient who was dedicated to pacing and I believe their gene expression after exercise was better controlled than those who hadn't practiced pacing.
    ahimsa and SickOfSickness like this.
  11. Plum

    Plum Senior Member

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    Thank you very much Sushi and @Inester7.

    Apologies for steering the post in a slightly different direction.
  12. Valentijn

    Valentijn Activity Level: 3

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    I've started using a finger pulse oximeter to pace, and so far it's been very helpful.

    I simply can't avoid some activities where heart rate goes too high (walking up or downstairs once per day, taking a bath, etc), but for most activities I can check to make sure my heart rate is low enough before I do anything that's likely to raise it a bit. And, of course, I avoid activities that I know will crash me.

    I seem to do a lot better if I avoid any extra activities when my heart rate is over 90 or so. If I'm under 90, then I'm pretty safe to be mildly active for 5 minutes or so at a time (making dinner, watering plants, etc) with appropriate rests. If I do stuff when it's already high, then it stays high for longer - sometimes for days.

    After several days of sticking to it and keeping my heart rate low, I do tend to feel better. Almost healthy or something, which can be a bit weird :p
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  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I've noticed this too--doing stuff when my HR is 90+ is not so great for me. I am able to do a pilates class using machines and mostly lying down. My HR rarely gets to 90 in the class but it is tiring and later, if say I stop at the grocery store on the way home, (radical adventure, I know! :eek:) just the really mild aerobic effect of walking around the supermarket will send my pulse over 100--so it is one of those leaning on the supermarket cart like a walker times.

    For me, my pulse will only stay elevated (while doing mild aerobic activity) for that evening. But it is quite interesting that, though I don't exceed my AT in class and don't get PEM from it, the expenditure of energy (quite a big expenditure!) of the class will cause my HR to increase with mild aerobic activity for several hours afterward.

    Sushi
  14. taniaaust1

    taniaaust1 Senior Member

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    In my own case, that would be very bad advice as that isnt restrictive enough for my case as Im hit so severely by POTS due to the ME that I could end up unconscious or having a seizure incident from doing things too long on one day but still be recovered by the next. Obviously it isnt wise to be doing things till unconsciousness or a seizure.

    My condition worsening in any way at all is a bad sign (whether its a sore throat coming in or weakness etc) and means I need to stop and rest (at times aggressive rest therapy (ART) eg bed till the next day..

    15mins of activity to 15 mins of rest.. causes me a crash within a few hours. For each 15mins of activity Ive done, I need 30-45mins of rest to recover from that activity. I dont think anyone should be setting specific ratios of rest/activity as we are all different and some may have more mito dysfunction going on and need more rest time then another. We all need to work out what our ratio needs to be.
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  15. taniaaust1

    taniaaust1 Senior Member

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    I too wonder what you mean by "extreme pacing" Pacing if done properly should be done quite strictly anyway if one wants it to be working well. I too wonder if you are reather refering to ART?

    It was due to ART that i ended up having a full remission for 2-3 years. I used this to help my body heal to a normal state of being again. Full remissions arent common with ME so I guess my experience shows just how helpful ART can be.

    It isnt easy to do ART.. not easy to enforce yourself to bed rest more then your body is calling for at the time, to make sure you arent overdoing things. eg if you feel like you need 1hr in bed, spend 1.5hrs in bed instead is an example of how ART could be used. Over time, its like the excess energy builds up (rather then getting out of bed and quickly burning this energy) and ones health can get better and better. (well at least it was how it was for me).

    Of cause this brings a risk of developing things like POTS and deconditioning due to being in bed so much while using ART so could work against some but in my own case activity is my bodies worst thing and it is that which causes my ME to crash or have its wide range of symptoms flaring.

    I personally just rather have POTS from excessive bedrest then having the severe FM and all virally and neuro symptoms I used to have with feeling ill ALL of the time, symptoms now Im mostly free from. (My current severe POTS thou isnt caused by lack of being upright or exercise, exercise doesnt help it at all). Anyway.. that is the one risk of too much rest (of cause weight gain and things like that also can become risk factors for some too with a lot of activity restriction).

    The worst you suffer from POSTEXERTIONAL symptoms, the stricter you need to be with your pacing. Those who have CFS but dont get post exertional symptoms, things like ART and pacing may not even help improve.
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  16. CFS_for_19_years

    CFS_for_19_years Senior Member

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    That was an example Dr. Bateman used to give patients an idea of how to pace themselves. She also gave the example of 15 minutes activity and 30 minutes of rest. I think she had in mind that patients needed to work out their own ratios. For full recommendations from Dr. Bateman, I would watch her video, which is 1 hour and 20 minutes long. (Yawn, I know!)
    Valentijn likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    Thanks for explaining her recommendations further to me to clear up the misunderstanding I got from the other post. I cant watch her video due to my dial up computer connection which doesnt enable me to watch moving things on my computer.
  18. Sammy1

    Sammy1

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    What I mean by extreeme pacing is pacing that completely prevents PEM. I didn't know about the term ART but it's more or less what I tried to express.

    What caused you to fall out from full remission?

    Here is another example of how to do pacing. It's called the 70 %-rule, I learned it from my me/cfs clinic. Basically, at any given time, you should only use 70% of your total energy. This will give you a good margin that hopefully will prevent any setbacks/PEM. The tricky part is how to know how much energy an acitivity consumes. My personal guideline is that an acitivity that consumes 70% energy or less should always feel fairly comfortable and you can do the activity with great ease.

    It's the same for me, activity is my bodies worst enemy. I'm ok with getting around in my apartment, however, I don't get any benefit from taking a walk and similar activities. I feel like my body is like a locked bike. You can drag a locked bike but it's not good for the bike and the longer you drag the bike the greater damage you cause.
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  19. taniaaust1

    taniaaust1 Senior Member

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    I caught a virus (just one which was going around the place and everyone was getting) and that triggered a slight relapse into ME again asI kept working as seeing it was "only a virus" and I'd been completely well for quite a while, I felt completely safe to work when my body had a virus. I thought I was long past the ME (no idea that I could once again have a crash/post exertional symptoms). After I did that I was down to about 80% of my healthy self level, which I believe I would of recovered from again, but then with this slight relapse I got forced to work.. So crashed very bad again (but nowhere down to where my previous bad state was, I just became housebound not bedbound).

    So anyway.. the things which trigger people to get ME/CFS in the first place, can trigger off this illness a second time, it may not be whatever triggered off the ME in the first place for the person but another common trigger for this illness. We are always going to be susceptable to this illness due to I believe our genes.




    That is an excellent rule to have. One does need a margin as one never knows if one is going to be having a worst day then the day before so ones body is less tollerant then normal or some life crisis could happen making you have to do more then was planned (family emergency or whatever). So yes their needs to be a good leyway there if you wish to make sure you never overexcede your limits.


    I love the way you explained it there.

    best luck with things
  20. Sammy1

    Sammy1

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    best of luck to you too taniaaust1 and thank you for sharing your experiences. Your experiences shows that we always have to be cautious, even when we reach full remission.
    ukxmrv likes this.

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