What is Hypermobility Spectrum Disorder (HSD) and Ehlers Danlos Syndrome (EDS)?

Hypermobility Spectrum Disorder (HSD) are connective tissue disorders, often seen as part of hypermobile-type Ehlers Danlos Syndrome (hEDS). Currently there is not a genetic test to differentiate between these two conditions, however it is possible that they exist as the same condition presenting along a spectrum. The good news is that management does not differ greatly between the two conditions – with awareness and education often being the key for early interventions.

EDS includes 12 other types that do have a genetic component and can be tested for. Each type has variable features, with some features being seen more commonly across most types – such as the hypermobility of joints and skin extensibility. The majority of these sub-types are quite rare compared to hEDS, for further information you can visit the Ehlers Danlos Society website.

What are some of the features of HSD and hEDS?

There are many different symptoms that may present as part of HSD and hEDS. Some individuals may experience all or only some symptoms, with differing levels of severity. Some examples of how hypermobility can present symptomatically includes:

• Joint-related
  • Pain
  • Instability/subluxations
  • Stiffness can be present in adults with a history injury/s to a previously hypermobile joint
• Other common symptoms include:
  • Fatigue
  • GI issues
  • Headaches
  • Autonomic dysfunction

Some conditions often co-exist with HSD and h/EDS, but it is not yet understood how or why these often co-occur. These include ADHD and/or autism, POTS (a type of dysautonomia), as well as MCAS (Mast Cell Activation Syndrome). Research into these areas is still emerging, and it is important to note that not everyone who is hypermobile will have these other conditions, in the same way that not everyone who has one or more of these other conditions is hypermobile. Diagnosis of many of these falls outside of the scope of physiotherapy, however good management of HSD and h/EDS involves consideration of other (potential) diagnoses to ensure the best possible care. Where appropriate, we can assist in referring to other health professionals for further diagnosis/management.

Why Physiotherapy and Podiatry are important for managing HSD and h/EDS

Because HSD and h/EDS affect the whole body’s connective tissue, management usually works best when it looks beyond just the painful joint of the moment. This is where physiotherapy and podiatry play such an important role.
Physiotherapy helps by building strength and control around joints that may not have the same natural stability as others. Rather than chasing more flexibility (which is rarely what’s needed), physiotherapy focuses on:

• Improving muscle strength and control to better support lax joints
• Retraining movement patterns to reduce strain, pain and the risk of subluxations
• Building tolerance for everyday activities, exercise and sport
• Helping to manage fatigue and pace activity appropriately
• Building confidence in the body and its movement
• Education and self-management strategies for the long term

Podiatry is just as valuable, particularly because the feet and ankles are often significantly affected by joint hypermobility. Excess movement through the foot and ankle can change the way load travels up through the whole body, contributing to pain not just locally but at the knees, hips and lower back too. A podiatrist can assess foot posture and function, and where needed provide supportive footwear advice, orthotics or targeted foot and ankle strengthening to improve stability from the ground up.
Working together, physiotherapy and podiatry help address hypermobility from top to bottom – building a more stable, resilient base while also improving strength and control throughout the rest of the body.

How our Life Performance Hypermobility team can help

Our LP Hypermobility team brings together physiotherapists and podiatrists with specific experience in HSD and h/EDS, so you’re not left trying to piece together your own care plan.

We take the time to properly understand how hypermobility affects you as an individual, and build a management plan around your specific goals – whether that’s returning to sport, managing everyday pain and fatigue, or simply feeling more confident and stable in your body.

A key part of this is prescribed, expert-led exercise. Generic exercise advice can sometimes do more harm than good for people with joint hypermobility. Our individualised exercise approach is one of the most effective tools we have for reducing pain, preventing injury and improving quality of life over the long term.

Where appropriate, we also work alongside other health professionals – including GPs, rheumatologists and occupational therapists – to make sure you’re getting well-rounded, coordinated care.

If you think you or someone you know may have HSD or h/EDS, or if you’re already diagnosed and looking for the right support, our Life Performance Hypermobility team is here to help.