Ehlers-Danlos Syndrome and exercise

The truth about exercising with hypermobility and Ehlers Danlos

What does the word Exercise mean for you? Does it fill you with dread and anxiety? It is time that narrative changed for the community?

Defying the odds: I’m never one to tell someone they should stop doing something they love. I believe there is always a way forward, even if we need to approach it differently. I’m not saying this would be easy – it requires determination, strength, commitment and belief. I do believe that it does not matter where your starting point is today, there is always a way forward no matter how small the steps.

I have recently been working with a young man who dreamt of being a professional football career (which he’s just achieved with a club signing). Painful joints, lack of stability and fluidity in the tissues was hindering this dream. We worked together via Zoom during the pandemic and in the studio when we were allowed. He had a home programme that we designed for his needs. But hats off to his sheer determination to practice and train every day to overcome his pain.

On my podcast, Finding Your Range, I’ve interviewed a number of people with EDS who use exercise to help manage their condition. It is essential for their mental and physical health. I’ve met climbers who live for the climbing wall, dancers who are guided by the music and body boarders who cannot wait to get out on the sea. A member of The Zebra Club online recently returned to figure skating after diligently completing my online videos three times a week for three years. That’s commitment to a dream.

We all have dreams – it may be to be able to garden or play pain free with our children. Or to sit at a desk for work without neck pain. But I encourage everyone to hold that dream. With appropriate, regular exercise and movement education, you never know what’s possible.

In my role as a movement therapist, I have the privilege to speak to many people every day living and learning to thrive despite having a chronic illness. We do have to make changes, but it’s not the end of the road. We just have to do things differently from before. People are often told to exercise when diagnosed with hypermobility by medical professionals. Strength work and ‘core stability’ is often on the menu early on with multiple reps of each exercise. With someone starting out, this can lead to the risk of overuse injury and strain. My views on ‘core stability’ work is well documented in my blogs and my books. This in turn can create frustration and self-blame assuming that there must be something wrong with us or we are doing something wrong that is causing injuries. The impact of the boom-and-bust cycle can be impactful and discouraging. The story of hypermobility exercise and rehab programmes really does need to change across the board if we want to change lives. We see the same narrative currently with people living with ME and Long Covid and how frustrating this has been to get people to understand that ‘pacing’ isn’t a one size fits all solution.

I highly recommend we find our baseline – what can we do safely without causing a flare up and then build up from that baseline? That prevents the possibility of boom-and-busting. It does not matter if that baseline is low. I think it is important we do not compare ourselves to others or to our ‘old’ selves. For sure, there will be a period of adjustment and acceptance but once there is this mentality shift, the focus on one baby step at a time can take you a long way.

Please do take a listen to the recent Podcast – The Truth about EDS Exercise over on my YouTube channel if this post resonated with you.

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