Improving support and care for people with hypermobility disorders

Hypermobility disorders or ‘syndromes’ are where a person’s joints and connective tissue are very flexible, causing musculoskeletal problems and long-term pain. Hypermobility syndromes are also linked to mental health issues.

There’s plenty of guidance for managing long-term pain, but little targeted support for people with hypermobility syndromes.

Project aims

We will look at potential interventions that don’t rely on medication, to improve pain management and mental health for people with hypermobility syndromes. Improving mental health is an important part of pain management, so we’ll specifically explore psychological and behavioural approaches.

We will work with people with hypermobility syndromes, including Hypermobility Spectrum Disorder (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS), and the people who support them.

Our work so far

We held 5 online meetings with 33 people with hypermobility syndromes, and their family and friends. In the meetings, groups were prompted to talk about treatments that don’t rely on medication, that are most helpful for managing joint pain in the context of hypermobility.

From the information we gathered at the meetings, we created an illustration highlighting the top treatment strategies that were talked about. This summary was reviewed by experts in medicine, physiotherapy, nursing, and occupational therapy, from the Hypermobility Syndromes Association (HMSA) and other hypermobility specialist services throughout the UK.

The top treatment strategies we identified were:

• Address the trauma of painful experiences
• Accept and work with pain
• Seek education about hypermobility disorders
• Pace yourself
• Treat mental health conditions separately from the psychological impact of hypermobility
• Practice mindfulness
• Stay socially connected
• Use support-wear sensibly
• Do water-based exercises
• Use hands-on therapies to relieve tension
• Do strength and balance classes
• Do hypermobility-informed physiotherapy
• Keep moving every day

What we hope to achieve

We hope this initial fellowship project, led by Anna Hurley-Wallace, will lead to further research. Ultimately, we want to improve the support and care that people with hypermobility syndromes receive, particularly in relation to their joint pain and mental wellbeing.

You can read more about this project and its findings in this blog.