Show Notes
Welcome Back Rheumatology Fans, Many of you will remember Mike from “Rheum Mates” which was a podcast series that we did a few years back. It is never boring chatting with him and so we discussed his PhD of all things which is on the sometimes spicy topic Hypermobility! 2017 hEDS Criteria: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31552 For case studies, webinars and a whole lot more - upgrade to the paid substack or enroll in my online course HERE Below is an AI Summary Of The Podcast Mikes PhD Focus & Research Direction * Original Aim: Investigate evidence for conservative (non-surgical, non-pharmacological) management of HSD/hEDS in adults. * Shifted Focus: Now looking at pediatric cohorts due to a lack of robust adult RCTs. * Adult studies are often low-quality, opinion-based, or use flawed inclusion criteria (e.g. only Beighton score). * Pediatric studies have more rigorous RCTs with better sample sizes and clearer outcomes. 📚 Key Learnings from the Literature * Hypermobility ≠ HSD or hEDS:Many people are hypermobile (e.g., "double-jointed") but are asymptomatic and don’t meet diagnostic criteria. * Beighton Score Alone Is Inadequate:It doesn’t account for widespread pain or systemic symptoms—should not be used in isolation to diagnose HSD/hEDS. * Proper Criteria Needed:Diagnosis should be based on the Brighton criteria or 2017 hEDS criteria, not just joint flexibility. 👶 Pediatrics & Early Diagnosis * Delay in Diagnosis Is Common:Many are misdiagnosed or ignored—sometimes taking up to 15 years to get a correct diagnosis. * Symptoms Often Multi-Systemic:Includes joint pain, dislocations, stretchy skin, fatigue, GI issues, POTS, anxiety, etc. * Early Diagnosis Matters:Leads to better patient outcomes, validation of their symptoms, and appropriate support. 🧠 Clinical Challenges * Heterogeneity:Two people with hypermobility can present very differently—one may function as an elite athlete, the other may be disabled. * Unclear Why Some Develop HSD/hEDS:Genetics don’t yet explain it fully. Severity of hypermobility does not predict chronic pain or dysfunction. 🏃 Management & Treatment * Exercise & Education Are Key:Strong evidence shows structured exercise improves pain and function. * Two RCTs (Kemp et al. & PACL) showed general exercise programs work just as well as targeted ones in children with hEDS. * Surgery & Medication Less Effective:Lack of evidence supporting these as primary treatment options. * Athletes May Self-Manage by Staying Active:Gymnasts and dancers often remain asymptomatic due to regular strength and mobility training. ✅ Clinical Tips to Avoid Missing Diagnoses * Distinguish Hypermobile Joints from HSD/hEDS:Most hypermobile individuals are healthy—don’t over-diagnose. * Use Full Diagnostic Criteria:Don’t rely on the Baten score alone; use Brighton or 2017 hEDS criteria. * Educate & Empower Patients:Reassure them that appropriate exercise and education can improve quality of life. * Recognize Impact of Delay:Long-term mismanagement leads to worsening symptoms, mental health issues, and loss of function.
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Welcome Back Rheumatology Fans, Ooof this is going to rattle some cages. Synopsis below but the best of this is watching the video. A recent news report about a woman with rheumatoid arthritis who was convicted of benefit fraud caught my attention. The case involved footage of her participating in activities including gym classes and running events despite having previously reported substantial limitations in her day-to-day function. I don’t know enough about the individual circumstances to comment on whether the judgement was appropriate. In fact, the reported offence appears to relate specifically to failing to notify the Department for Work and Pensions of a change in circumstances. But the story raises a broader issue that is highly relevant to people living with inflammatory arthritis and the clinicians treating them. Being physically active does not necessarily mean someone is not disabled. Rheumatoid arthritis, psoriatic arthritis, axial spondyloarthritis and other long-term inflammatory diseases can be enormously variable. Symptoms may fluctuate over time, treatments can substantially improve function, and limitations in one activity do not necessarily predict someone’s ability to perform another. Exercise also forms an important part of rehabilitation. I might see someone who currently cannot run, play tennis or golf because their inflammatory arthritis is poorly controlled. Following improvements in medication and a structured rehabilitation programme, one of our explicit treatment goals might be to return them to those activities. For another person, the goal might simply be getting upstairs more comfortably. To achieve that, we may use relatively demanding strengthening exercises in a gym. Seeing that person performing a squat or leg press tells you very little, in isolation, about how easily they can negotiate their stairs later that day. That distinction matters. We should not create an environment where people receiving appropriate financial support become frightened of exercising because they worry that being seen in a gym, lifting weights or participating in sport could somehow be interpreted as evidence that they are no longer disabled. From a clinical perspective, I want people with inflammatory arthritis to be as active as their condition, preferences and circumstances allow. Where possible, that includes meeting general physical activity recommendations and incorporating cardiovascular and resistance exercise. There are good reasons for doing so. Maintaining physical activity can help protect muscle and bone, improve cardiovascular health and support broader long-term health outcomes. For some patients, returning to demanding exercise is itself a major marker of successful treatment. None of this means that changes in someone’s circumstances should not be reported where required. That is a separate issue. The important point is that exercise capacity and disability are not opposites. A person can exercise and still experience meaningful restrictions from inflammatory disease. They can also improve dramatically with treatment while continuing to have limitations elsewhere. As clinicians, we should be encouraging people towards greater function—not inadvertently giving them another reason to be afraid of achieving it.
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This is a free preview of a paid episode. To hear more, visit rheumatologyphysio.substack.com