Exercise with ME/CFS and FMS An Update

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We hear “you need to exercise” but less often we hear how. So I share my experience in case it helps you.

exercise with me/cfs and fibromyalgia

I’m a big fan of exercise. When I got sick with the inciting incident for the chronic fatigue syndrome (the pain had been developing slowly prior to this), I worked as a gym receptionist and worked out a lot. I also walked everywhere.

Needless to say I was physically fit, had excellent muscle mass and was decidedly not overweight. Yet I slept poorly, had chronic pain and then developed chronic fatigue syndrome.

Over the years my ability to exercise tapered off as I simply couldn’t continue. However I still did more than most.

Until I ended up back at home, burnt out and very unwell I continued Pilates classes and walking to and from work. My pace was slow but I did it.

The Turning Point

Cutting my exercise down to manageable levels was one of my turning points. I reduced pain (glute and leg pain was exacerbated by exercise) and my neck and back were relieved when I stopped trying to do Pilates like I was normal.

I learnt to pace. Accidentally at first and then as I learnt about chronic pain and fatigue, on purpose.

Across the intervening 12 years I’ve slowly rebuilt my exercise routine many times. Five from scratch. Four pregnancies and one major surgery. I also completed a 200 hour yoga teacher training programme!

The important thing to note is that I haven’t just rebuilt my exercise levels, I’ve worked on improving my whole health. We clearly can’t just exercise away serious insomnia issues, or pain or fatigue.

exercise with me/cfs and fibromyalgia

My holistic plan includes:

I’ve learnt a lot and shared my five best tips for getting started here

Four Tips for Starting Exercise with ME/CFS and Fibromyalgia

  • Do what you like and will do
  • Start slow and low
  • Follow your own goal
  • Listen to your body

If you’ve got chronic fatigue syndrome its even trickier as aerobic exercise can be stressful on the body.

Coming to Now

And we meet present day. Coming into this brutal summer, I’d got back to 8000 steps a day, six months after my operation. This included 20-30 minute walks with the children and dog and a 5 minute strengthening routine I was trying to build up without irritating my tricks spots (sacroiliac joint, knees, neck, back).

The heatwave that came really knocked me back. One day I was so sick that I couldn’t physically stay upright. That evening as it cooled off and I was in the air conditioning, I realised I’d done less than 1000 steps and that my muscles would get mad.

Context: my muscles burn if I do too much or too little exercise.

So I searched YouTube for a walk at home video. And found a wonderfully American, peppy, lady called Leslie Sansone. I did a one mile walk with her and team of smiling walkers. The actual routine is quite high intensity so I adapted it and essentially just “walk walk walk”. I added 2000 steps to my count in 15 minutes. And it was fun. It felt like the old days.

Being me, I did this every (early) evening for a few days and ended up in pain. Lesson learnt, I reduced to every two days.

Then I searched and found a one mile walk at home for beginners and seniors. Although it wasn’t as fun as the high energy Leslie, it was more my heart rates pace. I followed everything including the steps designed to use different leg muscles, abdominals and arms. It was perfect.

So I began doing that every second day.

exercise with me/cfs and fibromyalgia

My Goal

My goal is to do two miles (30 minutes) with all the moves. I want to build muscle, especially as a woman who’s had four children and a hysterectomy. I also just love it. And the only consistent research on fibromyalgia is that fitness levels are correlated with lower symptoms. (All bodies are designed to move).

I share this because I share my journey to better health and this is a big part of it. But also to share a practical example of starting exercise as someone with chronic illness.

You can start with one mile, heck you can start by walking to your letterbox and back. You can also do yoga in bed. Reclined exercise is good if orthostatic intolerance or POTS is an issue.

We hear “you need to exercise” but less often we hear how. So I share my experience in case it helps you.

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