Exercise and Ehlers Danlos Syndrome (EDS)

The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders which affects the body’s connective. EDS is on the long spectrum of hypermobility-related disorders, often characterised by joints moving further than normal ranges. This can lead to joint instability, dislocations and other related issues. The underlying cause of EDS is a key abnormality in the structure or function of the collagen in our bodies (and certain allied connective tissue proteins). The overall prevalence of the Ehlers-Danlos syndromes is between 1 in 3,500 to 1 in 5,000 people. The hypermobile variant of EDS (hEDS) is by far the most common type and may be more common than that as it may be missed or misdiagnosed as something else. 

Some common symptoms of EDS can include:

• Chronic pain – joint, muscle and/or nerve

• Fatigue

• Dislocations and/or subluxations of joints

• Postural orthostatic tachycardia syndrome (POTs) or orthostatic intolerance (e.g. getting very dizzy and/or blacking out/fainting when standing up)

• General body deconditioning > leading to inability to do our usual daily activities and connection with society

• Mental health disorders, e.g. depression, anxiety

• Scoliosis

• Structural weaknesses that can increase risk of hernias and/or pelvic organ prolapse

*Every individual is different and presents with different and varying symptoms, this is just common symptoms experienced.*

While there is no cure for the Ehlers-Danlos syndromes, there is treatment for symptoms, and there are preventative measures that are helpful for most.

This is where an Exercise Physiologist can help!

Individualised exercise interventions have been shown to help people with EDS in the following ways: (*not limited to)

• Improving self-esteem and mental health

• Improving fitness levels

• Stress and tension release

• Increasing muscle tone, strength and endurance capacity

• Decreasing incidence of joint subluxations/dislocations

• Decrease chronic pain

• Improve overall stability, function and decrease risk of injury

• Improve management of orthostatic intolerance or POTs

• Allow the individual to return to previous and/or new activities and reintegrate with society

• Feeling more confident about moving in their body

In saying this, there is often many barriers for individuals with EDS to start back with exercise. There is often fear around what exercise they should start with and whether it will ‘flare up’ or worsen their current symptoms. This is a very common fear and is very understandable, and therefore an individual assessment is mandatory for anyone resuming exercise with EDS to ensure that your Exercise Physiologist can prescribe you the correct level and selection of exercises to ensure no worsening of symptoms.

It is important to understand that exercise (and movement in general) forms one of the central pathways of managing EDS (and hypermobility spectrum disorders) and can offer you the capacity to hopefully improve your functional capacity and ability.

So if you or someone you know has EDS, POTs (or orthostatic intolerance) and/or hypermobility syndrome, please reach out to the team at Any.Body and see if we can be a part of your healthcare team to support you along your journey.