Hypermobile EDS & Chronic Pain
Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) cause widespread chronic pain, joint instability, and fatigue that require a specialized, individualized approach to pain management — one that accounts for the unique physiological challenges these conditions present.
What Is Hypermobile EDS?
Hypermobile EDS is a heritable connective tissue disorder in which the body’s collagen — the structural protein that holds joints, skin, and other tissues together — does not function normally. As a result, joints move beyond their expected range and are more prone to pain, subluxation, and injury. The most common form of EDS, hEDS produces chronic widespread pain, profound fatigue, and a range of systemic symptoms affecting the autonomic nervous system, digestion, and other organ systems.
Hypermobility spectrum disorder (HSD) describes related conditions with similar clinical features that do not fully meet the diagnostic criteria for hEDS. Both conditions are significantly underdiagnosed and underserved in the pain management community — and both require a provider familiar with their nuances to be treated safely and effectively.
What Pain in hEDS Looks Like
Pain in hEDS is typically multifocal and can include widespread musculoskeletal pain, recurrent joint pain from subluxations and micro-instability, nerve pain from compression or stretching of nerves in unstable joints, myofascial pain from muscles working overtime to compensate for lax ligaments, and headaches — particularly cervicogenic headaches from cervical instability. Many patients have been told their pain is psychosomatic or untreatable before receiving an accurate diagnosis.
How We Approach hEDS Pain Management
Effective pain management for hEDS requires an individualized plan that accounts for the unique physiological features of the condition. Medication management plays a central role, with careful attention to common sensitivities and atypical responses. Trigger point injections can provide meaningful relief for the myofascial component of pain. Nerve blocks may be appropriate for specific localized nerve pain. Joint injections can reduce pain and inflammation in specific joints as needed.
We work collaboratively with physical therapists experienced in hypermobility — emphasizing stabilization over stretching — and coordinate with rheumatology, neurology, and other specialists as your overall picture requires. A consultation is the right place to start building a plan that is safe and realistic for your specific situation.