Resource: The Anti-Exercise Fitness Regime

[Edit I haven’t succeeded in being able to do this properly, but it did help me get to an official Postural Tachycardia Syndrome diagnosis and appropriate treatment. The advice about limiting heart rate and morning resting heart rate has helped me. I’m not convinced about increasing activity in a planned way even at this level.

Increase activity as you feel well enough, imposing limits on the increase rather than pushing for the increase. This is a key point. I firmly believe that exercise is not treatment for ME. However, as we improve for other reasons we obviously want to increase activity. In my personal experience I have previously got to 95% and could walk miles. I didn’t need a formal regime to do this, I just gently nudged my Pacing boundaries as I could feel I was getting better.]

This is the first post in a series on activity pacing

Do not click away in disgust, this is not the same as GET! Some people describe it as Anti-Exercise because you do so little that it is not what other people would recognise as proper exercise, it is very slow but they say it helps if you persevere.

SEEK ADVICE FROM THE PERSON WHO KNOWS THE MOST ABOUT YOUR HEALTH BEFORE CHANGING ACTIVITY LEVELS – OVER DOING IT CAN CAUSE SERIOUS RELAPSE BUT UNDER DOING IT CAN STORE UP FURTHER HEALTH PROBLEMS. WATCH THE VIDEOS BELOW BEFORE STARTING. IF YOU CAN, INVOLVE A PHYSIOTHERAPIST AND DO A VO2 TEST.

The basic idea is to avoid hitting your Anaerobic Threshold (AT) or raising your Morning Resting Heart Rate (MRHR) to avoid crashes and relapses. Initially this may mean doing less (it has for me). My understanding of the process is:

  • Buy a heart rate monitor with a chest strap (mine cost £15, not free but a one off cost).
  • Calculate your estimated AT = (220-age) x 0.6
  • Set an alarm on your monitor to go off at your AT and avoid hearing the alarm
  • Record your MRHR for 10 days and average, before increasing activity
  • Observe which activities you can do under your AT
  • Observe which activites bring you near to MRHR (do more)
  • Start using a plan like the newbie one on: Exercise Plan
  • Observe your MRHR everyday and never exercise or do much on days it goes over your averaged MRHR by 8%
  • Carry on for 90 days whether or not you see improvement, but not if you get worse (cut back temporarily if MRHR is high or you feel worse)

 

After 90 days assess how its going

Example plan:

Exercising near your Anaerobic Threshold (but not over it) is ‘on’ in the plan, lying down to rest is ‘off’

  • Weeks 1&2 twice a week exercise 1min (=on), rest 2min (=off), then 1min 0n, 2min off, 1min on, 2 min off (ie only 3 minutes of exercise twice a week!)
  • For weeks 3-5 continue but three times a week
  • Weeks 6-8 continue 1min on, 2 min off but so that you do 4mins exercise 3 times a week
  • Weeks 9-11 this becomes 6mins exercise, 2mins on, 2 mins off, 3 times a week
  • Weeks 12-14 8min in 2min cycles, 3 times a week

Please could people suggest exercise activities? I realise this will be very individual depending on what triggers your threshold – for some cycling, for others stretching lying down. I find eating puts me in the right zone bpm wise but I think that might be really stretching the concept of exercise!

Full Exercise Plan

These videos explain the general principle:

Exercise & ME-CFS: VO2 Max Testing

https://youtu.be/kbaW4JKkin4

Exercise & ME-CFS: Post VO2 Max Testing Consultation:

http://youtu.be/SAdfEMCuPk8

Exercise & ME-CFS: Implementing Exercise Programme 

See also Phoenix Rising and Cort Johnson

POTS and Orthostatic Intolerance

My plan to start this properly has been somewhat scuppered by observing what my heart rate is doing. Eg 70bpm lying > 120bpm on standing, 145bpm standing to brush teeth, 175bpm reaching up to get something. My AT is 110bpm so any time I stand I exceed my AT, undermining recovery. This video may explain some of what is going on here:

Importance of safe exercise to prevent autonomic problems:

My readings and symptoms are also very POTS like (Postural Orthostatic Tachycardia Syndrome) so I’m looking into this as an additional (and somewhat treatable) diagnosis.

Anyway, I felt a bit frustrated about how to proceed with the anti-exercise regime but found some advice to someone with similar standing issues: try exercising lying down and when you have to go over your AT in Activities of Daily Living (ADL) try to do it for less than a minute.

A full review will follow at some point when I’ve more experience of this regime, but on first impressions getting the heart monitor is helpful even if you only use it to stop yourself overdoing it.

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19 thoughts on “Resource: The Anti-Exercise Fitness Regime

  1. Anti-Exercise! Love it!!

    The word “exercise” on its own, is really not appropriate to ME patients. We can do so little to physically keep some muscle strength, whilst still staying within the tiny energy envelope that our illness gives us.

    However using a HR monitor helps to prevent us overdoing things on those days we feel well. And not just for our anti-exercise, but also for our daily living activities!

    The HR monitor tells me that on days I have PEM I can do much less without my HR rising higher than I’d like. So it really is a very useful tool to help us pace.

    Thanks for the article. I’ll check a few of those videos again. xx

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    • Yes, at the moment I haven’t properly got into the Plan (due to orthostatic intolerance issues) but the monitor helps with pacing just because the beep is annoying and that motivates me to stop!

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  3. Jenny I think you may need to just wear the monitor for a while and let it slow you down and shift what you do and how you do it. It may be enough. When you feel stronger then work on strengthening yourself. Anyway I went from a 30% to a 50-60% in one year doing it this way. Now I feel I can begin the exercise program. I know this is not by the book but it is working for me.

    What is your body saying to you? If you do body scanning meditation you can become more aware of what your body wants which helps a lot. I like this better than a regimen imposed from the outside by a doctor in Florida who has never met me. I love Nancy Klimas, don’t get me wrong and she helped me a lot but it worked better for me to trust myself than keep endless records while very ill with only half a mind available. This year I will try her protocol.

    By the way I appreciate your synopsis. I will copy it and use it.

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    • Thanks Kate. From my limited experience so far i think there is a definite place for using a heart rate monitor for limiting activities and also as bio feedback so that you learn for the future how you feel when your heart rate is lowe or high and which techniques you can use 2 controls s thisso far i am undecided about how useful exercise regime will be for me burts i am very interested in the more

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      • (Sorry tablet in a bad mood using voice recognition) scientific approach to pacing the approaches 4 pacing i’ve come across before are either very subjective and so may depend more on your mood about your symptoms, or they are very regimented and don’t adjust tohwhat your body is telling you. morning resting heart rate measure seems very interesting in this way it does seem to reflect overdoing it on previous days.
        it is very encouraging to me to hear that you so a 30 percent 50 percent improvement because i’ve tens tended to hover around20 to 30 percent for the last couple of years so that is somewhat comparable. however i am hopeful that i can find a low key activity that enables me to follow this anti exercise regime properly. today i’m going to try recumbent, lying down yoga from fiona agombar. i’ll be sensible and if trying if different things still causes dips, increase symptoms or on-going hi morning heart rate I’ll stop the exercise element for a few months

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    • BTW mindfulness style body scan does seem to be a good technique for bringing down bpm. You instinctively relax the parts of the body you’re thinking about. To some extent I can mentally drop my bpm by doing this. Although overall I am a little disappointed by the reduction in bpm while meditating. My pulse can be significantly lower watching tv which was a big surprise to me.

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  13. Heart-rate monitoring is something I’ve been wondering about for a while. As you wrote this post a long time ago now, do you still you use this particular equipment or have you upgraded? Would you still recommend it – it’s still available at amazon and is quite cheap? does it work with an app or did you record data manually? Don’t rush to answer Jenny, I’m not in an urgent hurry, but very interested if something as economical as this monitor might be helpful in assessing and planning appropriately. Best wishes 🙂

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    • Hi. I have now upgraded to a Mio Fuse for two reasons. Mainly because I found the strap uncomfortable – they’re not really expecting you to wear it all day as most people use just for a workout. The Fuse is just a watch and seems accurate. I also wanted to keep a record of my pulse as I was starting to control it with medication (for the POTS which I discovered through this monitoring). My fuse connects to an app but the cheap one from Amazon doesn’t. In the end I was actually dissatisfied with the Mio app but I can use it with the ME-CFS Assistant app. There are alternatives to the Fuse, but I recommend getting one that beeps or vibrates in real time when you change heart rate zones (eg the Fitbit doesn’t seem to do this). Even my £16 monitor could do this so I don’t know why all the expensive ones aren’t built with the option…

      So far I haven’t been successful with the activity regime. This was mainly derailed by the POTS stuff. I do use the monitor to stay under my AT though. My POTS doctor says the next phase will be increasing activity (v difficult with ME as well), so I intend to use this protocol as a guide for that, starting with sitting/lying exercise.

      I keep meaning to write a proper update to this post, especially as you don’t seem to be able to watch the videos anymore and the facebook group became more demanding.

      Liked by 1 person

      • Jenny, thank you so much for your reply and my apologies for being so very slow to respond! I might go for something as cheap as the unit you started with while I save up. Then I can work out what I need, look into the apps, which I guess could be useful and things like that 🙂

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