Living with chronic joint pain, fatigue, or repeated injuries can be frustrating and scary—especially when answers feel out of reach. For many people, these symptoms are part of a group of underdiagnosed but increasingly recognized conditions related to joint hypermobility. Two of the most common are hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD).
These conditions can be complex and often misunderstood, but with proper understanding and support, people with hypermobility disorders can lead healthy, fulfilling lives.
If this sounds like you or someone you love, understanding hypermobility disorders like hEDS and HSD could be the key to finally getting answers. Let’s break it down.
What Is Joint Hypermobility?
Joint hypermobility means your joints move beyond the normal range of motion. For some, this is harmless. You might have been a flexible child, good at gymnastics or dance, and never experienced pain. However, when hypermobility causes chronic pain, dislocations, fatigue, or issues elsewhere in the body, it may point to an underlying condition like hEDS or HSD.
Understanding hEDS and HSD
Hypermobile Ehlers-Danlos Syndrome (hEDS):
- A genetic connective tissue disorder
- One of 13 recognized types of Ehlers-Danlos Syndromes
- Common symptoms include joint hypermobility, chronic pain, fatigue, stretchy skin, and sometimes complications involving digestion, the heart, and nervous system
- Increased risk for associated conditions such as autoimmune disease, dysautonomia (e.g., POTS), and mast cell activation syndrome (MCAS)
Hypermobility Spectrum Disorder (HSD):
- Refers to symptomatic hypermobility not meeting full hEDS criteria
- Symptoms often mirror hEDS, including joint pain, subluxations, fatigue, and digestive or autonomic concerns
- Just as impactful on daily life
The key difference between the two lies in diagnostic criteria. People with HSD don’t meet all the requirements for hEDS, but their experiences and needs are just as valid.
Common Symptoms
- Joint pain and hypermobility
- Frequent dislocations or joint “popping out”
- Chronic fatigue
- Soft or stretchy skin (more common in hEDS)
- Easy bruising
- Digestive problems (IBS, SIBO, reflux, gastritis)
- Autonomic symptoms (dizziness, rapid heartbeat)
- Pelvic floor dysfunction
- Poor wound healing or visible scarring
Symptoms vary widely. Some people experience just a few, others many. Every case is unique.
The Diagnostic Journey
Diagnosing hEDS and HSD is challenging due to symptom overlap with other conditions and the lack of a specific lab test.
Differential Diagnoses May Include:
- Other Ehlers-Danlos types (some are genetically testable)
- Marfan Syndrome
- Osteogenesis Imperfecta
- Loeys-Dietz Syndrome
- Autoimmune diseases (e.g., lupus, rheumatoid arthritis)
- Fibromyalgia
- Chronic Fatigue Syndrome (ME/CFS)
Diagnosing hEDS
Based on the 2017 criteria:
- Generalized joint hypermobility (Beighton score)
- Two or more of the following: features of connective tissue disorder, family history, systemic involvement
- Exclusion of other conditions
If these criteria aren’t fully met, a diagnosis of HSD may be appropriate.
Living with hEDS or HSD: Treatment Strategies
There is no cure, but management can greatly improve quality of life. Treatment is tailored to each person and may include:
1. Physical & Occupational Therapy
- Core focus on building joint stability
- Injury prevention
- Gradual strength and posture improvement
- Seek practitioners trained in hypermobility
2. Pain Management
- Medications and supplements
- Trigger point injections, TENS units
- Prolotherapy (injections that stimulate healing) or PRP (platelet-rich plasma injections using your body’s own cells) for joint stabilization
- Acupuncture
3. Lifestyle Modifications
- Energy pacing and rest strategies
- Avoiding repetitive, high-impact movements
- Regular, low-impact exercise (e.g., walking, swimming, Pilates)
- Prioritizing sleep, nutrition, and hydration
4. Nutritional and GI Support
- Manage IBS, SIBO, and other GI symptoms
- Consider food sensitivity testing or elimination diets
5. Mental Health Care
- Address anxiety and depression
- Seek therapy, support groups, or somatic-focused modalities
- Cultivate self-advocacy and medical empowerment
Why Early Recognition Matters
Getting an accurate diagnosis and care plan can:
- Prevent injuries and long-term complications
- Improve physical function and resilience
- Reduce psychological burden from medical gaslighting
- Offer answers, relief, and support
Many patients feel immense relief when their experience is validated and named. Diagnosis is often the first step toward reclaiming quality of life. In my own practice, I’ve had the privilege of walking alongside patients who’ve struggled for years without answers. Helping them find clarity and relief is one of the most rewarding parts of my work.
Patient Tips for Navigating Care
- Track symptoms and patterns
- Bring photos of dislocations or skin signs to appointments
- Advocate for yourself: ask questions, bring a support person, seek second opinions
- Find specialists with hypermobility knowledge (many genetics clinics and EDS programs exist nationwide)
Conclusion
Hypermobile conditions like hEDS and HSD are real, impactful, and often overlooked. But with the right information, diagnosis, and care plan, you can take back control of your health and wellness.
If you think you may be dealing with hypermobility-related concerns, don’t wait. Schedule a visit with me at Alpine Integrated Medicine, and let’s explore how we can support your body with care that understands your condition—and you.
You deserve to be heard. You deserve a care plan that works.
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