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​I have previously been told I am hypermobile, so why was EDS/G-HSD ruled out?

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  • Hypermobility falls along a spectrum and is a common physical feature of the human body. 10-25% of the population has some degree of hypermobility. Most cases of hypermobility are NOT due to EDS.  

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  • Generalized joint hypermobility (GJH) is measured using a  goniometer to confirm the degree of mobility you have in your joints. You can have some degree of hypermobility in your joints and not have EDS or generalized hypermobility spectrum disorder (G-HSD). 

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  • Your hypermobility may have previously been assessed inaccurately. To accurately assess the Beighton score a tool called a goniometer must be used to assess the correct joint range of motion. If the Beighton score is assessed only by eye, without the use of a goniometer, this can lead to an inaccurate Beighton score. 

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  • Joint instability can occur without joint hypermobility.  This means it is possible to have dislocations or subluxations of joints without having generalized joint hypermobility. Joint instability without generalized joint hypermobility is not indicative of EDS. 

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I have "all the symptoms" of EDS, so why was this ruled out?​

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  • EDS diagnoses are made in accordance with the international consortium of EDS 2017 diagnostic criteria. This criterion requires patients to have generalized joint hypermobility and multiple features of connective tissue weakness. Without evidence of connective tissue weakness and generalized joint hypermobility a diagnosis of EDS cannot be made. 

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  • Many symptoms that patients with EDS may experience are also common in other chronic pain disorders and may also be found in the general population. Symptoms such as pain, fatigue, headaches, functional gastrointestinal disorders, anxiety, depression are NOT part of the diagnostic criteria for EDS/G-HSD and cannot be used to make a diagnosis of EDS/G-HSD.   

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  • Chronic pain affects 1 in 5 Canadians. Chronic pain is not only caused by EDS.  The cause of chronic pain is sometimes unknown, but treatment is available. Talk to your primary care provider about management of chronic pain. 

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  • Comorbidities such as POTS and MCAS are not part of the diagnostic criteria for EDS/G-HSD. These diagnoses can occur without a diagnosis of EDS/G-HSD and do not necessitate EDS assessment.   

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  • Genetic testing is only offered/required if you meet the minimal diagnostic criteria for a monogenic (genetically identifiable) type of EDS. Genetic testing cannot be used to diagnose hEDS/G-HSD. This testing is arranged by our program only if your symptoms are suggestive of a genetically identifiable type of EDS.  

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I do not have EDS or G-HSD what now? 

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  • Follow up with your primary care provider to discuss your symptoms and next steps. 

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  • You may want to consider referral to a comprehensive multidisciplinary OHIP funded pain clinics such as TAPMI in Toronto or Micheal De Groote pain centre in Hamilton etc. 

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  • If you have musculoskeletal pain, consider seeing a physiotherapist to help assess and manage your pain. 

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