Managing Ehlers-Danlos Syndrome (EDS): Moving Smart, Not Hard

Living with Ehlers-Danlos Syndrome (EDS) doesn't just mean navigating joint instability, as it can also include unexplained fatigue, pain, sensitivity and an array of other medical implications.

Therefore, movement can be very intimidating.

The right type of movement, guided by an exercise physiologist, can help improve quality of life, build confidence, and reduce discomfort.

What Is Ehlers-Danlos Syndrome (EDS)?

The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders

• The conditions are caused by genetic changes that affect connective tissue

• Each type of EDS has its own set of features with distinct diagnostic criteria

• Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility

The most common form, Hypermobile EDS (hEDS), is characterized by:

• Joint hypermobility (joints move beyond normal range)

• Frequent sprains, dislocations, and pain

• Fatigue, dizziness, and poor proprioception

• Fragile skin or poor wound healing (in some types)

Note: Hypermobile EDS (hEDS) is different to Hypermobility Spectrum Disorders (HSD)

How Exercise Physiologists Can Screen for EDS

Many people with EDS go years without a diagnosis.

As exercise physiologists, we’re often one of the first clinicians to observe patterns that might suggest something more than “just being flexible.

While we don’t diagnose EDS, we are trained to screen and identify red flags that may point toward a connective tissue disorder. Early recognition can lead to earlier diagnosis, better outcomes, and safer exercise interventions.

1. History and Symptom Patterns

We take note of:

• Long-standing joint pain or instability

• Frequent injuries or slow healing

• History of repeated dislocations

• Fatigue that seems out of proportion to activity

• Postural issues, dizziness, or dislocations

• Family members with similar symptoms

2. Beighton Score

This clinical tool checks for generalised joint hypermobility on a 9-point scale.

It includes:

• Finger and thumb flexibility

• Elbow and knee hyperextension

• Ability to touch palms to the floor

A positive Beighton score is any score greater than or equal to 6/9 points in children (before puberty), 5/9 points in adults and 4/9 points in adults over age 50.

3. Functional Movement Screening

EDS clients often demonstrate:

• Poor core stability

• Excessive mobility without control

• Unusual fatigue after basic movement

• Utilise joints rather than muscles

• Reliance on momentum rather than muscle control

4. Planning

If EDS is suspected, we:

• Educate the client about the observed signs and symptoms

• Refer to a GP or rheumatologist with clear clinical notes

• Continue to support the client safely through tailored activity and exercise

Even without a diagnosis, EDS signs and symptoms can still be managed through appropriate postural awareness and a progressive exercise plan.