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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.

4 Comments
  • AlexaFaie
    Posted at 03:44h, 11 March Reply

    What do you do when you baseline is subluxations without much movement at all? I can be sitting mostly still, then maybe turn my head slightly or breathe in a little more deeply than normal, or just laugh at something funny and that’s enough to cause a subluxation or even dislocation of something somewhere in my body. And its a coin toss as to whether it will be one of the joint pops that’s mostly pain free or if its one which leads to pain. Like just now I moved my right arm to move the blanket off my lap so I could then stand up, but just moving the blanket I’ve done something to my shoulder blade area. I got a shoulder pop & now it hurts to move/turn and something feels out of place.

    Is there really much hope when its this level? Like if I wake up having dislocated something in my sleep, how am I meant to be able to get to the point of trying exercises? I desperately want to be able to work on strengthening stuff but how do I start from this super low level where a simple breath can cause an issue that requires bed rest to recover from? I don’t even care about exercise in terms of activities, I’d just like to be able to move around my house without stuff falling apart.

    • Jeannie Di Bon
      Posted at 09:25h, 15 March Reply

      Thank you for sharing your story. Sorry to hear you are struggling with subluxations. Have you managed to see an EDS aware physio to help give you some tactile feedback and guidance?
      It is hard for me to give specific advice as I do not know your medical history or how you move. But it sounds like alignment is needed together with some isometric work first to get the joint working. Again, ideally this would be done with some assistance from a physio or movement professional to help you ensure alignment is correct.

  • Michele Mathieu
    Posted at 17:28h, 06 April Reply

    I am very interested in learning more about safe exercises for people with EDS. I am 59 years old and only now learning I have EDS. All my past issues now make a great deal of sense, and in particular childhood illnesses I still have issue with today. I have always been active but osteoarthritis has set in, particularly in my knees, hips, lower back and shoulders, Seems every year a new joint becomes problematic, recently my thumps and wrists as well as some gastrointestinal issues which is why I was tested for EDS. I have what people are calling flare ups and I am getting more and more as I age. They are debilitating and I am sore everywhere, tired, lack appetite, and think I am even running a slight fever. Truly horrible. The most recent event happened during a house move. Carrying boxes and such back and forth and up and down stairs (definitely hurt) for only an hour ended up in a very painful event. My family thinks I am just a frail person these days.

    I like to exercise as it makes me feel good mentally, but I pay physically. I want to know how to exercise and still care for myself and this EDS. I am seeing a physiotherapist right now and they are doing laser therapy on my left knee, helps very minimally and think I am wasting my money. They tell me to so strengthening exercises but seem to know little about my condition. I ask for exercise options but I don’t feel I am getting good advice and don’t know where to turn, No one, including me, really understands this disease which doesn’t help.

    Anything you have will help immensely.
    Thank you for posting.

    • Jeannie Di Bon
      Posted at 21:27h, 07 April Reply

      Thank you for sharing your story. I would start looking at my YouTube channel that has a wide range of exercise classes for EDS and hypermobility. You may also want to consider our community membership app – The Zebra Club. You can find out more at http://www.thezebra.club. Hope these are useful.

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