Nov 7, 2011

The Issue of Exercise

Exercise is a funny thing with ME/CFS.  Too much and you're in bed for days.  Too little and you decondition, which only adds to your problems, really.

I have two doctors with very different views on this; Anne Small, currently advising me to get as much rest as possible (she actually looked pained when I asked her about a safe way to get fit - the answer, incidentally, was 'walking'); and Chris O'Callahan, who treats CFS patients with 'Postural Orthostatic Tachycardia', which, in English, means you don't have quite enough blood, and what you do have obeys gravity more than it should, pooling in the legs rather than circulating).

Chris's advice is to get lots of exercise, but keep it as horizontal as possible ... (Did your mind go there?  Sadly, mine did).  What he means is things like swimming or bike riding, and I know a few people who've had success with that.

I also know people who've 'crashed' horribly and haven't been able to get out of bed for months after an attempt to get physically fit.

So which is the right call?

My thought right now is to try the gym.  I found out my local community centre has a massive range of equipment and classes and taylor makes your program for you.  They do swimming, yoga, pilates and water aerobics which all sound relatively CFS friendly.

I went in last week to get an assessment and program.  The girl who set it up for me, was adorably blond (despite being a brunette) and got very flustered when I said I had CFS.  She was very reluctant to let me use anything that might fall on me if I nodded off during a workout!

I kindly explained - not for the first time - that CFS is different to narcolepsy, and that I just wanted to keep the cardio minimal.  Pushups, chinups and anything involving running were out, but other than that I was open to whatever.

I had my first workout today, and honestly, my head now feels like lead.  I'm in and out of bed, but have managed to both cook a casserole and write a blog entry with the energy still available to me.

It's likely the real payback will hit me tomorrow, so I'll have a better idea of the consequences then.

Exercise is a tough one with CFS, but I'm making a commitment to get a better handle on my limits, and hopefully raise them a bit in the next 12 months.


  1. Hey there I have FMS and I really get this exercise friend/foe thing. My friends tell me to do more (the ones who think that everyone has aches and pains... you know those ones?) and when I do exercise I PAY with days of muscle pain and spasm.

    The rheumatologist says to operate at 66% of my comfort zone. So if I am comfortable walking to the corner store and back I should really walk only 2/3rds of the way and forget the milk LOL.

    I have subscribed to your blog in spite of the fact that I am in denial about CFS :) cheers

  2. Thanks for subscribing :) Yes I am definitely familiar with the "everybody has aches and pains" types. I also have a good friend with Fibro, with similar symptoms to you. If she pushes too far she ends up with a limp, or her arm in a sling. I get joint pain, but nothing like that, and I don't envy you. Payback, for me, comes in the form of getting dizzy and faint and breathless to the point that I am useless. By brain goes confused and foggy. I think Fibro is also quite different in terms of reaction to temperature too; also based on this friend's experience. We're both very sensitive to it, but I die in the heat. She gets far more achey in the cold.


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