Pain Management Priorities from People with Hypermobility

A Patient and Public Involvement project led by Anna Hurley-Wallace (University of Bristol)

What is this project about?

Long-term (‘chronic’) joint pain is a common problem for people with hypermobility syndromes. Experiencing pain over a long period of time has a negative impact on people’s physical and mental wellbeing.

A recent study found that pain is a critically important symptom in hypermobility syndromes. This is agreed upon by people with lived experience, and health professionals [1]. Pain in the following body areas had the most impact on people with hypermobility syndromes:

·        neck and/or back.

·        pelvic or hip.

·        lower limb (legs, knees, ankles and feet).

·        upper limb (elbows, hands, fingers, shoulders and wrists).

·        neuropathic (nerves).

In terms of the impact of pain on wellbeing, we know that long-term pain causes psychological distress, and having a hypermobility syndrome increases the risk of mental health problems [2].

The aim of this project was to work with people with lived experience, and their family and friends, to identify pain management strategies that are acceptable and relevant to people with hypermobility.

What is known about joint pain in hypermobility syndromes?

Whilst there is guidance from the National Institute for Health and Care Excellence (NICE) about the best ways to manage long-term pain  [3], this guidance is not specific to hypermobility. Much of the NICE guidance is based on studies of people with other types of pain conditions, such as arthritis, fibromyalgia, and low back pain.

In general, long-term pain management takes a ‘bio-psycho-social’ approach. This means that medication, exercises, psychological, and alternative therapies are used to help each individual person. This project focuses on treatments that don’t rely on medication, with the understanding that some people take pain medication, and others do not.

There is a lack of scientific evidence about what works to improve pain when a person is hypermobile.

Recent reviews and studies show some support for:

• Mindfulness and Cognitive Behavioural Therapy [4].

• Informed exercise and physiotherapy e.g.,

• High-load strength training  [5], focusing on individual joints (i.e., shoulders, knees).

• Manual therapies e.g.,

• Heat, ice, acupuncture, joint mobilization [6].

More research is needed to make sure pain management strategies are relevant and suitable for people with hypermobility syndromes.

Who and what did this project involve?

This project included a series of 5 online meetings with 33 people with hypermobility disorders, and their family and friends.

In the meetings, groups were prompted to talk about treatments that don’t rely on medication (non-medicinal treatments), that are most helpful for managing joint pain in the context of hypermobility. Each meeting was summarised, and a grand summary was put together. The grand summary highlighted the top 12 treatment strategies that were talked about across all 5 meetings.

The grand summary of pain management strategies was reviewed by experts in medicine, physiotherapy, nursing, and occupational therapy, from the Hypermobility Syndromes Association and other hypermobility specialist services throughout the UK.

What did we find out?

The top 12 treatment strategies and key findings were illustrated by a local artist from Bristol. The illustration, ‘Pain management priorities from people with hypermobility’, is displayed below:

Many examples of each of these strategies were spoken about in the meetings. More details about each strategy shown in the illustration are given below:

Pain-related trauma – people spoke about fear of injuring themselves and traumatic past experiences of pain. For some people, a previous injury resulted in a traumatic and painful experience. There may also be traumatic experiences associated with being dismissed by health professionals, which are made worse if you are in pain at the time. One person suggested Eye Movement Desensitization and Reprocessing (EMDR) [7], as an option for dealing with pain-related trauma.

Accept pain – this was an important principal emphasized by people in the groups. Some pain may always be there, especially in the joints. However, accepting that pain can be managed, and it doesn’t have to have a detrimental impact on a person’s wellbeing was very important. Pain must be accepted and worked ‘with’ rather than ‘against’, in order to move forward.

Seek education about hypermobility disorders – people emphasized that education needs to be condition-specific. Many talked about the importance of labelling the condition, putting the pieces of the puzzle together, rather than focusing on separate symptoms. Education about hypermobility was viewed as distinctly different from chronic pain education. This is because the symptoms of hypermobility syndromes go beyond pain, branching into gastrointestinal issues, allergies, prolapse, and more.

Pace yourself – this was meant not only in terms of physical exercise, but also in terms of generally managing your physical and psychological health. This might mean managing pain, alongside managing a mental health condition.

Treat mental health conditions separately - it was important to people in the meetings that having a mental health condition was not used as a way of saying ‘it’s all in your head’. The psychological impact of hypermobility syndromes should be separated from depression and anxiety disorders, which may or may not be related to pain or hypermobility.

Practice mindfulness – the emphasis of this strategy was to shift focus away from pain, instead focusing on activities of enjoyment. Whilst some people liked to use meditation to help draw their focus away from pain, others found active strategies e.g., walking, gardening and listening to music more helpful.

Stay socially connected – it was important for people not to become isolated and feel alone with pain and other symptoms related to hypermobility. One person mentioned that disability sports had been helpful for connecting in-person. Other people talked about using online forums to stay connected with others in a similar situation.

Use support wear sensibly – discussions included the potential for braces, splints and compression clothes to be helpful for stabilizing joints and preventing pain and/or injury. This comes with the caveat that it is important to strengthen the muscles around the joints, where support wear should only be used to restrict movement in specific cases (such as repetitive strain, subluxations, or a night-guard for jaw pain).

Do water-based exercises – a variety of water-based exercises were popular, including hydrotherapy, swimming and aqua classes. People used water-based exercises as a way of relieving pressure on painful joints, whilst also getting stronger and fitter. Some people said that being in the water is generally relaxing.

Use hands-on therapies to relieve tension – specific therapies included massage, chiropractic*, acupuncture/acupressure, and osteopathy. These were generally popular with people in the meetings, however, there were some negative experiences. Some people said hands-on therapies were great the first time, but didn’t help after that. Other people followed up privately (after the meetings) to say chiropractic therapy had changed their lives. These positive experiences were mostly because they had a practitioner who understood hypermobility and treated the whole body (not just one joint).

*Please note only low-force, gentle techniques are safe to use in hypermobility syndromes.

Do strength and balance classes – a variety of classes were spoken about, including tai-chi, pilates, and chi gong (Qigong). The stabilizing and strengthening movements in these classes had helped many people in managing their joint pain.

Informed physiotherapy – it was important that physiotherapists had knowledge of hypermobility, and that stabilizing wobbly joints was a core focus of any prescribed exercises. One of the health professionals who reviewed the priorities highlighted that the goal in regular physiotherapy is to increase range of movement – this is the opposite for people with hypermobility. People in the meetings also spoke about the importance of movement symmetry or ‘aligning the joints.’

Keep moving every day – last but not least, everyone in the meetings agreed about the importance of keeping moving, even if they could only move a little bit. This helped avoid becoming stiff and weak. Lots of people mentioned that they go for a walk every day, although moving daily can also include doing chair-based exercises or doing low-intensity exercises intermittently throughout the day (e.g., sit-to-stand, shoulder lifts).

As well as highlighting physical and psychological strategies important for managing pain, a central message was made clear: ‘It’s not just dealing with chronic pain, it’s the burden of managing constant injuries alongside chronic pain.’  This emphasizes the treatment burden that people experience, and the need for pain management to be targeted specifically for people with hypermobility. Managing constant acute injuries (most often subluxations and strains from over-stretching) and managing long-term pain at the same time can be challenging. These types of pain often require different treatments, services and expertise.

It was also important that any pain management programme created should be adaptable for neurodiverse individuals, including for people with Autism and attention deficit hyperactivity disorder (ADHD). This is because of the high overlap of people with hypermobility syndromes who also have Autism/ADHD or another form of neurodivergence.

Other pain management strategies, not included in the top 12, are listed below. They were not in the top 12 due to mixed opinions about the importance and usefulness of each strategy:

·        Transcutaneous Electrical Nerve Stimulation (TENS).

·        Yoga: depends on the practitioner and style of yoga (i.e., avoiding long-hold stretches).

·        Anti-inflammatory diet.

·        Cold-water therapy.

·        Sleep therapy.

There were also some discussions and questions about fluctuations in women’s hormone cycles and how this impacts pain and hypermobility. Whilst the topic is beyond the scope of this project, it remains an important area that requires further research.

What are the next steps?

Anna will continue working with the HMSA, and people with lived experience, in an effort to secure more funding to continue this work.

The main goal of this future work will be to create an accessible pain management resource that is tailored to the needs of people with hypermobility. This will include some of the physical and psychological strategies prioritized by people with hypermobility, which were identified in the patient and public involvement project.

Anna will also be looking to use existing data to provide scientific evidence for the long-term impacts of joint pain experienced by people with hypermobility. Providing this evidence can help prompt updates to clinical guidelines, so that people with hypermobility syndromes can get targeted support to improve their pain.

This work was supported by funding from the Biotechnology and Biological Sciences Research Council (BBSRC) through the Impact Acceleration Account (IAA). This study has been delivered through the National Institute for Health and Care Research (NIHR) Bristol Biomedical Research Centre (BRC). The views expressed are those of the author(s) and not necessarily those of the BBSRC, the NIHR or the Department of Health and Social Care.

References

1. Clark, N.L., Johnson, M., Rangan, A. et al. Defining a core outcome set for hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome: A Delphi consensus study. Clin Rheumatol. 2024;43:3951–3961. https://doi.org/10.1007/s10067-024-07172-3

2. Cederlöf, M., Larsson, H., Lichtenstein, P. et al. Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings. BMC Psychiatry. 2016;16:207. https://doi.org/10.1186/s12888-016-0922-6

3. National Institute for Health and Care Excellence. Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain. Published April 2021. Available at: https://www.nice.org.uk/guidance/NG193

4. Bohling-Davis, E., Khan-Lodhi, B., Jenkinson, E., Tremblett, M. and Meyrick, J. Quality of life with ehlers-danlos syndrome/joint hypermobility syndrome: A systematic review of psychosocial interventions. Musculoskeletal Care. 2025;23:e70070. 

https://doi.org/10.1002/msc.70070 

5. Liaghat, B., Skou, S.T., Jørgensen, U. et al. Heavy shoulder strengthening exercise in people with hypermobility spectrum disorder (HSD) and long-lasting shoulder symptoms: a feasibility study. Pilot Feasibility Stud. 2020;6:97. https://doi.org/10.1186/s40814-020-00632-y

6. Simmonds JV. Masterclass: Hypermobility and hypermobility related disorders. Musculoskelet Sci Pract. 2022;57:102465. https://doi.org/10.1016/j.msksp.2021.102465

7. Tesarz, J., Wicking, M., Bernardy, K., Seidler, G.H. EMDR therapy's efficacy in the treatment of pain. J EMDR Pract and Res. 2019;13:337-344. https://doi.org/10.1891/1933-3196.13.4.337