This is my March 2021 research review for Physio Network on Pain Management in the Ehlers-Danlos Syndromes by Chopra et al 2017. This review is open access – link here. Link to the original published research paper is here.
This is probably the most important book of the Year 2020 about EDS and HSD. It is a compilation of essays by a group of patients, carers, doctors, specialists and therapists, covering a wide range of topics.
Link to the Table of Contents is here.
Link to purchase is here. An ebook version is also available.
My latest research article review of a 2020 paper by Dr Brad Tinkle summarized in Audio, and available for free thanks to Physio Network. Click on link here to listen.
I’ll like to highlight an informative podcast interview with Dr Brad Tinkle published by Hypermobility Happy Hour (HHH). Dr Tinkle is a Clinical Geneticist and a well-published author of books and scientific articles on hypermobility and Ehlers Danlos Syndrome. The 2 part series podcast discussed the challenges associated with diagnosis, practical tips on management including some basic exercise and rehabilitation principles, and navigating a complex medical system. The podcast can be assessed from Hypermobility Happy Hour on Apple Podcast or here – search for “Interview with Dr Brad Tinkle”. Highly recommend.
When I was still a physiotherapy student almost ten years ago, I don’t remember being taught much about hypermobility. At most we were shown a Powerpoint slide about the Beighton scoring system to screen for hypermobility, but much was unknown about the correlation between hypermobility and the other medical conditions associated with it that can affect physical health. As physiotherapists, improving the physical health of those who come to see us through patient education, manual therapy and exercise prescription is definitely one of our key responsibilities.
Fast forward to 2019, more than 50% of my caseload in clinical practice now consists of those with Hypermobility Spectrum Disorders, including hypermobile Ehlers-Danlos Syndrome (hEDS), Marfan’s Syndrome and other Connective Tissue Disorders (CTDs). Clinically, I have found a close association between HSDs/CTDs and a myriad of other complex and intermingling conditions such as fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), dysautonomia, multiple allergies, and gut issues etc. These associations are supported by research (1)(2). Although some patients may not have these formal diagnoses, symptoms such as fatigue, dizziness related to positional changes, and pain are commonly reported in our patients with HSDs/CTDs. The degree and severity of these symptoms also vary widely amongst those who experience it.
Sharon Hennessey, my physiotherapy colleague and I work closely together at PhysioTec. Some patients come to see us upon referral from their General Practitioners and Specialists, and others have found us via word of mouth or online support groups. As this is a complex condition and an area of special interest for us, we have regular focus group meetings to discuss new research in the field and what we have learnt from interactions with our patients. These meetings have helped us develop and refine the patient resources we distribute, and provide effective assessment and treatment strategies. We also stay informed via the generous medical and non-medical community who have developed and regularly update some wonderful resources online (3). Often those with hypermobility benefit from the support of a multi-disciplinary team who are HSD/CTD-aware. Such a team may consist of a General Practitioner, Cardiologist, Geneticist, Rheumatologist, Gastroenterologist, Immunologist, Paediatrician, Psychiatrist, Psychologist, Gynaecologist, Occupational Therapist, Women’s Health Physiotherapist, Dietician, and Nutritionist etc.
As the condition presents very differently in every patient, an individualised treatment plan is critical. As a clinician and patient myself, I experience first hand the symptoms, including the frustrations and difficulty manoeuvring through the medical system which is not quite yet fully accepting of the diagnosis or condition. According to a recent speech by Lara Bloom, CEO of The Ehlers-Danlos Society, the average time taken to an EDS diagnosis is 12 years. Twelve years is an extraordinarily long “diagnostic odyssey” which would have traumatised, deconditioned (physically and psychologically), and let down many of those on the journey. I am heartened to be constantly working with this really resilient group of people who are not just patients but also often my teachers. Some of them have no choice but to educate themselves medically, that they become the “Project Managers” of their condition and comorbidities, and sometimes also of their families.
All our new hypermobile patients book their first appointment for an hour. This will allow us ample time to assess, formulate a treatment plan, educate and discuss any issues they might have. At the first appointment, depending on the priorities of the client, we may perform the following assessments:
- Beighton, Brighton, 5-point hypermobility screen
- Map body chart for symptomatic areas
- Discuss personal goals and key concerns
- Identify barriers to improve physical health
- This may include identifying other conditions associated with hypermobility and whether they have been addressed adequately
- Postural, movement impairments and functional assessment
- Other specific functional questionnaires (e.g. Patient Specific Functional Scale, Upper or Lower Extremity Functional Index) to establish baseline function
The physiotherapy intervention may comprise of the following:
- Initial patient education on hypermobility and coping strategies/tips. Patients will be directed to relevant resources and referred on as necessary.
- Establishing baseline level of activities and setting achievable short- and long- term goals
- Home exercises for good and bad days to improve cardiovascular fitness, strength, joint stability, proprioception/balance and mobility
- One-on-one or referral to our in-house group Pilates that can be catered to those with hypermobility
- Manual Therapy
- Taping for posture, joint protection, and/or movement facilitation
- Joint decisions on follow-up appointments and frequency of these appointments
- Continually monitor, educate and progress exercises as tolerated. Manage flares as soon as possible.
- Liaise with other health professionals involved
I have found my assessment and management strategies evolving over time as knowledge surrounding HSDs and CTDs continue to expand. Also symptom presentation vary widely amongst those with the condition, hence no two persons will receive the same assessment and treatment plan. I try to keep my website updated regularly of any new useful information that might come in. So, do keep an eye out for my new posts!
Before I sign off, I wish you all the best on your hypermobility journey!
Dr Chen is a registered member of the following organisations: