Treatment & Support

There is no cure for EDS, and no treatment that addresses its underlying cause. What exists is a range of management strategies that can meaningfully improve quality of life — and a smaller range of interventions that can make things significantly worse. Understanding both is essential, because people with EDS often encounter well-meaning clinicians, trainers, or family members who recommend approaches that are, for EDS specifically, harmful.

Physical therapy is the most evidence-supported intervention for hEDS, but only when provided by a therapist who understands EDS. Standard physiotherapy protocols — the kind applied to sports injuries or post-operative rehabilitation — are frequently inappropriate. Aggressive stretching, which is often recommended for musculoskeletal pain in the general population, is contraindicated in hypermobile EDS. Hypermobile joints do not need more range of motion. They need stability. The correct approach in EDS physiotherapy focuses on strengthening the muscles that stabilise hypermobile joints: proprioceptive exercises, closed-chain movements, isometric strengthening, and gradual, load-progressive programmes designed to build muscle support without pushing joints to end-range positions. Hydrotherapy and Pilates, adapted for EDS, are often well-tolerated starting points. High-impact exercise, heavy weightlifting without specialist guidance, and activities requiring joint loading at end range should generally be avoided until a stable strengthening programme is in place.

Pain management in EDS is complex and requires a multidisciplinary approach. Paracetamol and NSAIDs provide limited relief for many patients and often become less effective over time. Neuropathic pain agents — pregabalin, gabapentin, duloxetine, amitriptyline — may help when pain has a neuropathic component. Low-dose naltrexone (LDN) is used off-label by some patients with promising self-reported results, though controlled evidence remains limited. Opioids are generally not recommended for EDS — they do not address the underlying mechanical cause, tolerance develops quickly, and they can worsen associated conditions such as POTS. Interventional pain procedures (injections, nerve blocks) may provide temporary relief but do not address underlying instability.

The multidisciplinary team for EDS ideally includes a rheumatologist or geneticist for diagnosis and monitoring, a physiotherapist with EDS experience, an occupational therapist, and — because of the high prevalence of comorbidities — cardiologists, gastroenterologists, or allergists as needed. In practice, accessing this team is difficult. EDS specialists are few, waiting lists are long, and many healthcare providers are unfamiliar with EDS. Patient organisations — the EDS Society, Ehlers-Danlos Support UK, and national equivalents — maintain directories of informed practitioners and are often the most practical first step for newly diagnosed patients seeking specialist care.

Psychological support is part of treatment, not separate from it. Acceptance and Commitment Therapy (ACT) and pain-adapted Cognitive Behavioural Therapy (CBT) have evidence in chronic pain populations and can help people build a functioning life alongside their condition. It is important that this is framed correctly to patients: psychological support is not a suggestion that pain is not real. It is recognition that living with real, severe, chronic pain requires psychological tools that most people are not born with.