ME/CFS & Exercise

In this post, former ME/CFS sufferer and Coach Simon Pimenta explores the topic of  how ME/CFS sufferers can approach exercise without triggering symptoms.

There are many benefits of exercise. There is strong evidence that being physically active is good for your health and has a protective effect.

It has the following beneficial effects:
It improves immune function
It improves brain function: studies show it improves intelligence
It protects body against stress
It improves general body function

Exercise should include:

1. Stretching
2. Strengthening muscles; weight bearing exercise
3. Cardiovascular exercise; exercise that raises your heart rate

Lack of exercise de-conditions body, which leads to more problems.

For example, exercise improves heart rate variability (HRV). Poor HRV is associated with Postural tachycardia syndrome (PoTS).

For people with ME/CFS, exercise can be a tricky issue.

If you don’t exercise, the body doesn’t work properly.

However, if you over exert, you pay for it.

Some ME/CFS Expert Doctors believe that the cells of ME/CFS sufferers are not getting the fuel they need to function.

If energy supply is impaired, this affects heart function. If the heart isn’t working properly, then blood supply is impaired to the muscles.  So when we use muscles, the muscles quickly run out of oxygen and the cells start working anaerobically. This leads to the production of lactic acid, which stays in the muscles longer- due to lack of energy to deal with it, which results in muscle pain.

So How Does A Person With ME/CFS Approach Exercise?

I will answer that question by sharing what I learnt from 8 years of ME/CFS about exercise. I have explored the role of diet and supplements in previous blog posts.

1. I Viewed My Current Limitations As Temporary

At one point, I couldn’t walk for one minute. If I did walk for a minute, I would experience a very bad relapse, feeling debilitated for days.

I know others who would relapse for much longer.

I remember going for a swim at one point. When well, I  swam 3-4 times a week. Just doing 4 lengths left me feeling shattered and I concluded that swimming wasn’t good for me.

I now realise that that was a somewhat unhelpful conclusion, and that it would have been more useful to say “I can’t swim at the moment.”

I did recover from ME/CFS, and was able to swim, play tennis etc. I remember playing badminton for 3 hours some years ago. It made me reflect on how far I had come.

2. I Had To Learn To Stop Pushing Myself

Many times, I tried to do much, with the result that I relapsed.

Using up all my energy and going into deficit definitely hindered my recovery.

As I mentioned in the brief article on ME/CFS: Addressing The Fundamentals, using a maximum of 80% of my energy, where possible, meant that some energy was reserved for the body to use for healing/repair.

I believe that this was critical to my recovery.

Just to hammer the point home, Dr Sarah Myhill, who has many years of experience of working with people with ME/CFS/FM, states that people need to rest when they don’t have energy, NOT push through.

3. I Had To Listen To My Body

There were times when I did stop when I started to experience symptoms, thus avoiding a relapse.

Again, I believe that this was critical to my recovery.

This meant that I ignored the Graded Exercise principle of sticking to a baseline level of activity.

The Graded Exercise (GET) approach suggests you identify how much activity you can do daily and stick to that level, no matter how you are feeling.

Whilst that may work for some people, I knew that doing that on days when I felt less well would have just made me feel even worse.

I felt it was like telling someone with severe flu to still do the 5 mile run they did when well. Not sensible!

I suspect GET was created by someone who has never experienced ME/CFS/FM.

Top tip: listen to your body. Don’t do anything that doesn’t feel right for you at any given time.

4. Small Safe Steps

There is research carried out by Dr Charles (Chuck) Lapp that shows that if a person with ME/CFS did 20 minutes of exercise on a treadmill, it led to relapse.

However, if they did:
5 mins of exercise on a treadmill followed by 5 mins rest, 5 mins treadmill followed by 5 mins rest, patients could do 20 mins of activity without triggering symptoms.

Dr Nancy Klimas suggests 3 mins exercise, 5 minutes rest. However, tailor the times to whatever you feel you can manage.

I learnt to exercise in small chucks of time:

There were times when I was so exhausted, that all I could manage was to do Chi Gong for one minute, perhaps 3-5 times a day.

Chi Gong is a holistic practice of body posture and movement, breathing, and meditation. I was taught by a man, previously a marathon runner, who had been left wheel chair bound following a medical intervention. He put his recovery down to learning Chi Gong.

I would do half an hour of walking, in three 10 minute chunks.

I would do gentle weight bearing exercise, every other day, or every 3 days if I felt I needed to space it out more.

5. Create An Exercise Regime

I realised that it was helpful to create a plan of activity to follow and I would record my activity on a simple activity sheet

When I was very poorly, this might involve a gentle stretching routine whilst lying in bed.

For example:
Lift left leg 6 inches and gently return it to resting position. Repeat with right leg.
Raise left arm slowly to 90 degrees and gently return it to resting position. Repeat with right arm.
With hands by the sides, slide left hand down the leg, gently stretching right side and gently return it to resting position.
Then slide right hand down the leg, gently stretching left side and gently return it to resting position.
Slowly rotate neck gently to the left and then to the right and gently return it to resting position.

I might add exercises:
Bending left leg, bringing knee to the chest and gently return it to resting position. Repeat with right leg.
Lie on left side, raise right leg 6 inches and then back to rest. Raise right arm 6 inches and then back to rest. Repeat on other side.

You can download this exercise sequence as a PDF: GENTLE STRETCH ROUTINE

If I was able to get out of bed, I would do a gentle stretching routine that took 5 minutes, or as I have already said, do just a minute of chi gong once, twice or three times a day.

If I was able to walk, I would do a walk, depending on my capability and gradually build it up. So if I was able to walk for 5 minutes, I would do this for a few days, then maybe walk for 6 or 7 minutes for a few days, monitoring the after effects. Keeping a record helped with the monitoring.

At the same time, it is important to use record keeping as a tool, but to ensure that I stayed relaxed….

6. I Had To Learn To Relax

I realised that unconsciously I would get tense when exercising, fearing a relapse, which would then have an impact on how much exercise I could do, and the severity of the after effects of exercise.

Sometimes I would get myself into a relaxed state before I exercised. This was hugely important!

I learned that exercise, stress and rest were inextricably linked. The more stressed I was, the more rest/relaxation I needed and the more it affected my ability to exercise.

The more relaxed I was and the more effectively I was managing stress, the more I was able to exercise. There were other factors that affected exercise, but stress and rest were key factors.

7. I Used Visualisation

I would use meditation or relaxation techniques, sometimes visualising myself exercising in a calm manner.

There is research that shows that visualising exercise strengthens muscles! So if I was poorly, I would visualise doing gentle stretching, or walking.

I would also pause if I started experiencing symptoms, sit down and get myself into a relaxed state before I continued to exercise, or take a longer break, or stop for now.

8. I Tried Different Exercise Approaches

I went to a chi gong class for people with ME/CFS. Although chi gong seemed like some strange esoteric practice, I was open to trying it, and I found it beneficial.

I did yoga from a book.

9. I Used A Motivational Trick

Sometimes the issue around doing exercise was lack of motivation.

Dario Gerchi, who taught me Chi Gong, suggested telling yourself that you were going to exercise for one minute. I found that once I started, I was happy to do more.

This is a helpful strategy, especially when cultivating a habit. Once the habit is established, I find that I am less resistant.

Resources

Both recommended by people with ME/CFS:

Beat Fatigue with Yoga: A Step-by-step Guide by Fiona Agombar 

Pilates/Yoga: Beachbody PiYo Pilates and Yoga Exercise DVD

Dr Nancy Klimas recommends pilates and yoga for people with ME/CFS.

Closing Thoughts

Exercise needs to be approached with care, especially when a person is feeling extremely fatigued. 

My biggest learnings were to:
Take it gently
Stay relaxed- and pause if necessary to get yourself into a relaxed state
Listen to your body- stop and rest if necessary.

Comment

Do leave a comment on how useful you found this article.

I’d be interested to hear what things you are doing/have done that you have found helpful.

If you found the article useful, feel free to share.

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Disclosure

In the interest of full disclosure, I want to tell you that any links to Amazon are affiliate links. I have reviewed the product and have found that the content contains information that I found helpful when I had the condition unless otherwise stated. However, do your own due diligence before making a decision to invest in any product. Thanks for supporting my work.

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simon  SIMON PIMENTA is a hypnotherapist, coach and trainer working with people to boost resilience and performance, and minimise stress.

After working in a demanding job as the Director of a Housing Trust, he went off sick and remained unable to work for the next 8 years.

He discovered a pioneering approach to resolving health issues and got back his health, and now trains others using these same techniques.

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4 Responses to ME/CFS & Exercise

  1. Angie Joy says:

    Thanks very much Simon. I resonate with what you’ve shared. Im becoming increasingly conscious of keeping the body as relaxed as possible. Ive found myself doing stretches in the past like a tense ramrod!😉 Sometimes I now move my body in twisting, bending ways like a rag doll…all floppy, just to get a feel of relaxation.

    • Simon Simon says:

      Hi Angie

      You are welcome. Glad you found it helpful and that you are approaching exercise in a more relaxed way!

  2. Noel says:

    I have to say, I think the above is very insightful and contains some very useful specific advice.

    I find sometimes if I feel well, I am pleased about this, then try to ignore my limits or pretend they don’t exist, which leaves me all the more frustrated when I am reminded they do exist. Hence resting when reserves are present sounds great to me.

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