A pain in the hypermobile…with Jeannie DiBon

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• 15 February, 2024


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• EDS UK news

Jeannie DiBon, a movement therapist specialising in hypermobility, Ehlers-Danlos syndrome, and chronic pain has hosted several webinars with us at EDS UK, sharing her wealth of knowledge. During the pandemic lockdown, it was very quickly apparent that members were unable to appropriately access their local services for symptom management as everything had shut down. With long waiting lists and a lack of specialists, webinars such as Jeannie’s provided an excellent place to access helpful and practical information on the management of HSD and EDS.

Jeannie also specialises in rehabilitation Pilates and Polestar Pilates and runs the Zebra Club, an app and website providing management advice and exercises (fees apply). Jeannie was recently awarded an EDS UK Community Champion award. Nikki Casey, Senior Communities Manager, worked with Jeannie to set up several webinars guiding participants through hypermobility-friendly Pilates. A fantastic way of keeping self-management in place for those who were unable to attend anything face-to-face, it was a safe and accessible space for members. The sessions were a huge hit and brilliant to attend. The relaxation sessions at the end were so effective we had a few sleepers (me included). Seeing individuals being able to attend whether it was from a bed, wheelchair or sofa was brilliant!

Leading on from this Jeannie kindly put together a series of educational webinars, which we hope to continue in the future, making our way around the different parts of the body! Following the theme of ‘a pain in the hypermobile…’, whether this be the foot, shoulder, or back these educational, informative, and practical webinars provide a wealth of information and are accessible throughout the EDS UK website for free (membership is free and allows access to webinars and lots of amazing content).

The webinar ‘A pain in the hypermobile shoulder’ took a look at shoulder anatomy and why it’s tricky for those with hypermobility. For example, Jeannie discussed the head of the upper arm bone being three times larger than the socket it should sit in. This gives some clues as to why this is an issue with connective tissue. Jeannie also covered crawling and its relationship to shoulder instability, exercises and why it’s crucial not to be pushed quickly into weight-bearing exercises, and why starting with breath and relaxation is so important for hypermobile shoulders. The webinar was extremely well attended and with both a visual and descriptive explanation of the issues surrounding the shoulder as well as management tips. Unfortunately this webinar is not available to view on our website but all her others are.

Moving down the body, Jeannie took a look at the hypermobile back, covering a whole host of topics such as the pathologies of back pain, possible causes for hypermobile back pain, and the importance of alignment. Another well-received and informative webinar, the discussion of the spinal structure and its function, posture and back spasms, and the importance of motor control provided valuable information and insight into the problems patients can face. How to manage these symptoms taking into consideration how to begin exercising with back pain and building tissue tolerance to avoid flare-ups and core stability gave attendees practical and applicable knowledge to take forward. Pelvic pain and alignment as well as the role of feet in back pain highlighted how other parts of the body can be affected by and also affect the back, the impact they might have, and how to manage this was also discussed.

Speaking of feet, Jeannie’s third webinar, a pain in the hypermobile foot was another big hit, with fantastic attendance, and again, a wealth of knowledge was shared. Jeannie took a closer look at the form, function, and movement of the hypermobile foot. With foot and ankle pain, ‘flat feet’, and ‘collapsed arches’ being common in hypermobility, Jeannie tackled how these issues can be solved. Delving into the possible causes of foot pain, how the foot could be impacting pain further up the body, and why we need a foot tripod to avoid pain, Jeannie used her prop skeleton foot to clearly show the impact these issues can have. Leading on from that, the discussion of exercises to improve the mechanics and strength of the foot was demonstrated.

After each webinar, a question and answer session was held, allowing attendees to relate the information they had just heard to their personal experience. Although lockdown has ended, we are acutely aware of the lack of symptos management support in place for members of the community and the impact that this is having. We know that pain can be a major part of someone’s life with EDS or HSD, and as well as it being a complex topic it is often widespread throughout the body. It’s difficult to know where to start and how to tackle the issues faced when it seems like a mountain to climb. Sectioning the body into areas not only allows specific areas to be discussed in detail but also allows the build-up of knowledge to benefit the body as a whole, which can be extremely helpful.

Webinars like Jeannie’s are such a brilliant way of sharing much-needed information, especially when waiting for referrals. The feedback we received from the community about the webinars has been very positive. They are accessible at any moment and include captions. We are looking forward to continuing to work with Jeannie in the future, using her specialisation in the Integral Movement Method (IMM)) to provide realistic management for patients.