Characteristics of Pain in Patients Diagnosed With Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorders. An Observational Study

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BACKGROUND: This study aimed to describe pain characteristics in patients diagnosed with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorders (HSD) and to identify factors associated with moderate to severe pain at diagnosis. METHODS: Ninety-six patients were retrospectively identified through the Ce.Ma.R.S. registry (2017-2022). Pain intensity was assessed at first evaluation using a Numeric Rating Scale (0-10). Patients were grouped into no/mild pain and moderate/severe pain. Clinical and demographic data were collected, and variables significant in univariate analysis were included in multivariate logistic regression. RESULTS: At diagnosis, 49% of patients reported moderate to severe pain. Independent predictors were older age (OR = 1.06; 95% CI: 1.03-1.10), diagnosis of hypermobile EDS (OR = 6.25; 95% CI: 1.31-29.74), and headache (OR = 3.97; 95% CI: 1.14-13.82). Use of pain medications, particularly paracetamol and NSAIDs, was strongly associated with higher pain severity (p < 0.001). CONCLUSION: Pain is a common and early symptom in EDS and HSD. Older patients, those with hypermobile EDS, and those with headache are at greater risk of severe pain. Early, multidisciplinary pain management, including pharmacological treatment, physiotherapy, and headache-specific strategies, should be prioritized to improve outcomes and reduce long-term disability. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT04133272.

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