Hypermobility / Ehlers-Danlos Syndrome

📖 Overview

Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are connective tissue conditions characterised by joints that move beyond the normal range of motion. The connective tissue — the biological glue that holds the body together — does not provide normal stability and support.

Hypermobility affects the whole body, not just joints. It affects skin, blood vessels, the digestive system, the autonomic nervous system, and the immune system. Associated conditions include Postural Orthostatic Tachycardia Syndrome (POTS), mast cell activation syndrome (MCAS), dysautonomia, and chronic fatigue.

Pain is the most significant day-to-day feature for many people. Joint pain, subluxations (partial dislocations), and muscle pain from constant stabilising work are common. Pain is often dismissed or unrecognised, particularly in young women who are the demographic most commonly affected.

Hypermobility is significantly more common in autistic people than in the general population. The connection is not fully understood but is well established. Many autistic people with significant sensory and physical difficulties are also hypermobile.

Fatigue in hypermobility is significant and neurological as well as muscular — the body works harder to maintain stability and position, and the autonomic nervous system involvement adds to exhaustion.

Diagnosis is often delayed by many years. People — particularly women and girls — are frequently told their pain is not real, they are anxious, or they should exercise more. Physiotherapy is the primary management, but it must be adapted for hypermobility — standard strengthening approaches can cause harm.