Movement is Medicine – What’s the secret to healthy, sustainable movement with hEDS & HSD?
A diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD) typically comes with the advice to exercise regularly. But patients with these conditions are often unsure of how to exercise correctly or may experience anxiety around exercise due to prior poor outcomes. It is reported that patients often stop exercising because of four main reasons:
- Inappropriate exercise
We know that patients with connective tissue disorders do tend to decondition quicker than those without a disorder. Deconditioning can lead to a downward spiral where the patient may be even more reluctant to exercise. Being hypermobile can create musculoskeletal imbalances that cause pain and instability. If muscle tone and postural tone can be improved through conditioning and exercise, this can help reduce the imbalances in the body and consequently reduce pain.
As a movement therapist specialising in working with patients with hEDS and HSD for over 14 years, I have developed a specific method that can help alleviate these fears surrounding movement. This approach – the Integral Movement Method for hypermobility - looks are six key factors that I believe are necessary to build a strong hypermobile body.
We first need to address the kinesiophobia and anxiety around movement by calming the nervous system through breath and relaxation techniques, so that the patient feels safe. If a patient is scared or worried when exercising, their muscles will be tight, bracing in anticipation of pain.
Proprioception and stability work together. If body awareness can be attained through reducing range of movement and thereby improving joint control, the patient is going to start experiencing more stability. Working on alignment is very important to ensure we are building strength in the right place to give optimum functionality.
Introducing more challenging movements that involve balance and posture comes last. To safely promote balance, which is essential, the patient needs to have a good degree of body awareness first – otherwise they will brace and grip potentially using all the wrong muscles.
In addressing inappropriate exercise, it is important to remember that hEDS/HSD patients do not tend to follow a ‘traditional’ physical therapy route. A 6-week plan of improvement may not be achievable – there tends to be ups and downs in progress – and this needs to be taken into account. I strongly advocate a Go Low, Go Slow approach – slow pace of exercise to build sensitivity and awareness, slow pace of progression of exercise and low amount of repetitions to ensure tissue tolerance is gradually being gained.
Can you relate to any of these issues? How has your experience with exercise been? You can find a wide variety of movement and mindfulness classes on my hypermobility YouTube channel. For a structured and guided exercise pathway, please take a look at the app The Zebra Club www.thezebra.club.
Author: Jeannie Di Bon, Movement Therapist