[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
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
Exercise & ME-CFS: Post VO2 Max Testing Consultation:
Exercise & ME-CFS: Implementing Exercise Programme
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.