CFS and exercise
Find a level of activity and movement you can sustain

What is post exertional malaise?

CFS and exercise in the normal sense of the word don't mix well.

POST EXERTIONAL MALAISE (PEM) or post exertional fatigue or malaise are the official terms when symptoms follow exercise. 

Post exertional fatigue is a key symptom in the diagnosis of ME or CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome).
In fact an alternative name for the illness is Systemic Exercise Intolerance Disorder (SEID).

If you live with ME, CFS or long covid (covid long haul) the symptoms that follow exercise are likely to be an aggravation of symptoms you experience on an ongoing basis.

However, even though you may not be able to do your exercise of choice, you can still do some exercise.
This article aims to provide some guidance.

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Contents for CFS and Exercise

Scroll down for items on this page or click on the links for a further CFS/ME article.

  • Find the level of CFS exercise which is right for you
  • What exercise can I do when I live with Chronic Fatigue Syndrome?
  • The Benefits of Short Bursts of Exercise

A further article shares research into ME / CFS and exercise including the following information.

Or click for an article which gives advice on alternating rest and activity. This can be called pacing.
Pacing allows you to maximise the movement and functioning available to you.

Find the level of CFS exercise which is right for you

If someone asks, do you exercise, you may reply 'No'.

You might find it more helpful to change your language.

When you live with CFS/ME think of EXERCISE  as a level of movement and activity which you can carry out sustainably without aggravating the symptoms.

In a world in which we regard exercise as healthy and necessary, it can be deeply upsetting not to be able to engage in  exercise and feel one's body moving freely.
It is common  - if not universal - to get annoyed with yourself when your activity levels are affected by living with chronic illness.

But CFS and exercise can be combined. 
This may not look like exercise to yourself or other people, but please give yourself credit for doing what you can.

Be gentle on yourself.
You are a unique person.
You have unique character traits.
You are living with an illness which is manifesting in a unique way in your body.

Experiment gently to find a level of CFS exercise which is right for you.

At a level of severe CFS or severe ME (Myalgic Encephalomyelitis) your exercise level may be to be propped up three times a day to be fed a meal - this was how it was for me for many years.
With the illness, mild CFS or mild ME, it might mean going for a 20 minute walk each day.
You may be able to go to work. 

You are the only one living in your body 24 hours a day.
You are the best expert on yourself.
You will work it out.

My advice for Chronic Fatigue Syndrome is to pace and switch with aim of finding a sustainable level of activity for you.
Click through on the last link for the definition of pace and the definition of switch.

**********

What exercise can I do when I live with Chronic Fatigue Syndrome?

Here are some examples of possible exercise you can do when living with Chronic Fatigue Syndrome. 
Experiment to find one that works for you.

  • Qigong. If you are looking for gentle CFS exercise, I recommend Qigong which I do each day.
    Qigong also serves as a potential form of alternative healing.
  • Yoga Nidra
    You can find relaxation recordings which encourage you to tense up each part of your body and then relax it. This tensing and releasing is in itself an exercise which some of you may be capable of at a severe level of Chronic Fatigue Syndrome. 
  • Yoga.
    I recommend the online classes of Dr Helen Machen-Pearce. She offers floppy yoga!
    One book that gets mentioned often is Yoga Therapy for Stress, Burnout and Chronic Fatigue Syndrome, by Fiona Angoba.
  • Dance.
    If you are at a level of health where you are out and about and you are interested in dancing for health, you might want to look online to see if there is a 5 Rhythms Dance group or Biodanza group which meets near to your house. These are forms of therapeutic dance which believe that dance is not only an external but also an internal activity. If you have restrictions in movement it will probably be acceptable to sit or lie down and dance in your mind or with whatever level of freedom you currently experience. Check with the dance tutor before you attend.
  • Neuro movement by Anat Baniel
    One of the principles of neuro movement is that you do the movement slowly, with attention, and gently – you deliberately don't use force. It's not about stretching your muscles.It uses very slow and gentle movements to educate the brain on new ways of moving your body. It also includes the idea that if you can't do a stretch or movement without pain, then you stop at the point where it becomes painful, and if necessary you use your imagination.

    One of the instructions was to bring attention to the front of my spine. I had never before been asked to bring attention to the front of my spine and found this delightful. I realise that I am more aware of those parts of myself that face outwards.
    One of the principles of neuro movement is enthusiasm and delight, another is the principle of attention. It's delightful to me to every now and again bring attention to the front of my spine.

    Apparently there are parts of our body that we tend to have great awareness of, such as our hands. In a brain scan, the parts of our brain that correspond will light up. But there are parts of our body or of which were not aware, for example the pelvis.
    The pelvis is or should be implicated in many movements, and yet brain scans show that our brains don't have much awareness of it.
    One of the ideas behind neuro movement is that the more our brain can map our body, the more our brain can use what we have to allow us to move with ease and freedom.
  • Sitting exercises from the NHS. 
    I live in the UK and the NHS is our National Health Service.
  • Exercising in your mind brings benefit for your muscles 
    Research shows that exercising in your mind brings benefit for your muscles.
    The participants in a study imagined physically moving through certain exercises in the same time they would take if they were doing them for real. They experienced increased muscle strength as a result.
    From mental power to muscle power– gaining strength by using the mind. Ranganathan VK, Siemionow V, Liu JZ, Sahgal V, Yue GH. Neuropsychologia. 2004;42(7):944-56. The Lerner Research Institute, Cleveland.

The Benefits of Short Bursts of Exercise

Relevant to CFS and Exercise. First published 28 Feb 2013

New research shows that short bursts of activity can make a great difference to your health. For example, taking the stairs. 

This is good news for those who cannot sustain a period of exercise, and feel concerned that you are not getting 20 minutes of aerobic exercise three times a week, as so often recommended.

I find that some days I can do vigorous exercise  - such as mad dancing :-) for a very short period - maybe one minute - - and my body will take it when it would not take a more sustained activity.

(There are other days where it would not be wise to do this.)

I know there are some of you reading this for whom mad dancing seems a different world at the moment. My heart goes out to you.

As always, it is your body. Please find what works for you.

Here is a link to the research.

www.sciencedaily.com/releases/2013/01/130129100118.htm

Click here for research into the potential danger of exercise for a PWME  (a person with ME)
The article ME and exercise includes the following:

  • CFS and Exercise: People with CFS/ME report their findings
  • Effect of Acute Exercise on Fatigue in People with ME/CFS/SEID: A Meta-analysis
  • Harms associated with Cognitive Behavioural Therapy and CFS
  • The PACE trial for Chronic Fatigue Syndrome / ME
  • Quotes from doctors related to why CFS and exercise beyond our limits don't mix well.

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Disclaimer: I am not a medical practitioner. The articles on this website are not to be taken as medical advice. Please consult a medical practitioner as necessary.

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