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Chronic Fatigue Syndrome and Exercise

The question of whether or not you should exercise when you have Chronic Fatigue Syndrome is a tricky and complex one. It is also an extremely personal one, and very much depends on the level of severity of your condition.

When you are first diagnosed with CFS, it seems for a while that exercise is completely out of the question. Whatever level of physical activity you had before, trying to return to that level results in exhaustion, aching muscles and general malaise. After a while, you stop trying and give up any idea of exercise. After time, you start putting on weight, your body starts to lose tone, and your stamina deteriorates. This can be extremely depressing (on top of the depression that CFS brings anyway), especially if you were used to a very active life beforehand.

Believe me, I have experienced all of this for myself. Before my own diagnosis I used to do aerobic exercise three times a week, go for long walks, and was happy to dance the night away at a party or night club. I was pretty fit. All this came to an end, and after a while I started struggling with weight gain - something that had never bothered me before, and to add insult to injury, my body started to get 'flabby'. I worried that the lack of exercise would effect my health in other ways. I also felt guilty that I could not walk my dog as much as she loved.

How could I get back to any level of fitness while I still had CFS? I began doing a bit of yoga, and found that I could sustain this up to a point, as long as I took it slowly. I did take the dog for walks, but they were usually short ones, and at times my little Westie had to go without.

I heard about graded exercise therapy (GET), and what I had heard was mostly negative. Much of the reports I had read described people being pressurised to do more than they were able to, and therefore worsening their symptoms. So, when my doctor recommended a GET therapist in Oxford, I was extremely dubious. However, she assured me that this one was different, and based a programme completely around my own personal abilities and level of severity.

I started this programme, after an extremely long interview and questionnaire with the very friendly therapist. She then designed a programme with me that went a bit like this:

For one week, walk (slowly) for just 5 minutes every day.

The following week, walk for 6 minutes every day.

Keep adding one minute to the walk each week.

If you feel unable to walk on any day, don't walk.

For each day you don't walk, take a minute off the next time you do walk.

Build back the minutes every day until you are back to the level you were before.

Within three months, I was walking around 20 minutes a day without any ill effects. The dog was very pleased, and so was I. While I can't say that it cured my CFS, I certainly felt better that I was exercising more - and in the long run, gentle exercise does have a positive effect on many of the symptoms.

OK, so this isn't quite the same as aerobics three times a week, but to be honest, that was probably a little bit over the top - and pushing oneself to such a degree may be one of the reasons one ends up with CFS in the first place.

Also, a year ago in January 2020, I had a cough virus which I now believe to have been Covid, before it was such a big thing in the UK and two months before we all went into lockdown. After I recovered, I found that my CFS symptoms had worsened again, but with great patience (this is very much a two steps forward, one step back process), I am increasing my exercise times again, and beginning to feel better. Sadly, my little Westie is no longer with me, but I still get out for a short walk on most days, and I expect to be back to 20 plus minutes a day by summer.

So, here's the thing. Exercise is important for all of us, and even if you can't exercise to the level you were able to before, it is usually of benefit to do some exercise. However, it is EXTREMELY IMPORTANT that you don't do more than you feel able to (in fact, do less). You need to listen to your body, and be kind to yourself. For many of us, this is a difficult thing to learn, and enormous patience is required.

To summarise, if you have CFS and have difficulty getting back into any form of exercise, then I recommend the following strategy:

Start with what you CAN do - even if that's just walking across your bedroom, or to the

nearest lamppost.

If you find this is too much, rest until you recover. Then try again, taking a shorter walk.

Once you've found a level that doesn't exhaust you, try this every day for a week.

Each week, increase the distance or time by a very small amount.

If you need to take time off, then do so, then start again at a previous level, slowly

building up again.

I also recommend some very gentle yoga asanas. Try Restorative Yoga, which does not involve any standing poses, or Yin Yoga, which involves staying in pose for longer than usual, letting gravity do the work. Again, you can begin to build up very, very slowly, always listening to your body's needs and never pushing yourself further than you feel you can do.

In my recovery course on Udemy, I devote a whole week to discussing exercise for CFS. For more about this, visit my course landing page.

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