Living with EDS and Hypermobility

Being hypermobile doesn’t mean you automatically have a syndrome or a disorder. You may have no symptoms at all and in fact it can be very helpful if you’re a gymnast or dancer. But for many people, hypermobility can cause a wide range of symptoms. Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) are connective tissue disorders and if you suffer with either of them, they can cause joint hypermobility, instability and pain.

Why is it so hard to get a diagnosis?

Sufferers of EDS and HSD can have a wide variety and severity of symptoms making it hard for doctors to pinpoint what’s wrong. This means you may struggle on for years until you get a diagnosis. It’s stressful and frustrating.

Can they be treated in the same way?

In my treatment plans, I manage EDS and HSD in exactly the same way. One is not more severe than the other and both can present as musculoskeletal (your skeleton, muscles and all connective tissues) and/or multi systemic (affecting many different parts of your body). The most important thing is to recognise that every person’s experience of hypermobility is different. We need to tailor your rehab to your needs.

I’m nervous about exercising in case it does me harm.

I completely understand if you feel wary of exercising. If you have a diagnosis, you’ll likely have been told to exercise to build stability and strength. But there aren’t any clinical guidelines on how to exercise. I created my Integral Movement Method (IMM) as a way to move safely. I’m now working on a research project with UCL and Clarkson University into IMM to give us the evidence-based research we need.

So do I exercise or not?

The short answer is yes, but mindfully. I know from personal experience that exercise can help you manage your condition and your pain. It can build muscle tone, postural tone and improve proprioception (our sense of where and how our bodies are moving) and our joint control. But there’s a but. The exercise we do needs to be modified to accommodate our hypermobility. My IMM programme starts with relaxation. Only then can we work towards strength and stability.