We must think more widely on hypermobility and joint hypermobility syndrome

Commonly when a patient presents with hypermobility or joint hypermobility syndrome (JHS) there are a range of other problems that are painful or at least involve some sensitivity. This can include headaches, migraines, pelvic pain, chronic and widespread musculoskeletal pain, irritable bowel syndrome (IBS), fibromyalgia and fatigue. The underpinning sensitisation is the thread that runs through all of these conditions and can be targeted with a range of strategies. These functional pain syndromes are increasingly a problem, affecting large numbers of people, more women than men and at the seat of a great deal of suffering. This does not need to be the case.

Comprehensively looking at an individual’s situation, allowing them to tell their story, reveals much of what we need to know and understand. The narrative is key, providing all the clues that can be confirmed in the main by a simple examination. Of course in some cases further investigations are required, such as an MRI, blood tests or an x-ray.

Once the problems have been identified by listening and observing — much like good detective work! — then a programme can be designed to target the pain sources (mechanisms) and the influences upon these sources such as anxiety, stress, fatigue, negative thought processes to name but a few.

This recent paper seeks to raise awareness of hypermobility – Ehlers-Danlos Syndrome (EDS) – ¬†Joint hypermobility Syndrome (JHS), much as I do via these writings and talking to others in the profession. There are the more notable features of these conditions but then there are the factors that impact, the suffering caused, the limitations, the expectations and beliefs of the patient and the range of other painful presentations that are in fact part of the same picture, and must be addressed as such. The mission continues…

See our hypermobility clinic page here — or call us to start your treatment and training programme: 07932 689081 — we are always delighted to chat.

Am J Med Genet A. 2013 Dec;161(12):2989-3004. 

Re-writing the natural history of pain and related symptoms in the joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type.

Castori M, Morlino S, Celletti C, Ghibellini G, Bruschini M, Grammatico P, Blundo C, Camerota F.

Joint hypermobility syndrome (JHS) and Ehlers-Danlos syndrome, hypermobility type (EDS-HT) are two clinically overlapping connective tissue disorders characterized by chronic/recurrent pain, joint instability complications, and minor skin changes. Fatigue and headache are also common, although are not yet considered diagnostic criteria. JHS/EDS-HT is a unexpectedly common condition that remains underdiagnosed by most clinicians and pain specialists. This results in interventions limited to symptomatic and non-satisfactory treatments, lacking reasonable pathophysiologic rationale. In this manuscript the fragmented knowledge on pain, fatigue, and headache in JHS/EDS is presented with review of the available published information and a description of the clinical course by symptoms, on the basis of authors’ experience. Pathogenic mechanisms are suggested through comparisons with other functional somatic syndromes (e.g., chronic fatigue syndrome, fibromyalgia, and functional gastrointestinal disorders). The re-writing of the natural history of JHS/EDS-HT is aimed to raise awareness among clinical geneticists and specialists treating chronic pain conditions about pain and other complications of JHS/EDS-HT. Symptoms’ clustering by disease stage is proposed to investigate both the molecular causes and the symptoms management of JHS/EDS-HT in future studies.

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