Understanding Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders: A Guide to Management
- Lili Streader
- Apr 3
- 5 min read
Lili Streader, Associate Physiotherapist at Featherstone Physio Pilates has a special interest in hypermobility spectrum and EDS clients. If you would like a comprehensive assessment and treatment management plan book a 10 min free chat or an initial consultation with her. Proper and early diagnosis and treatment is important for better short- and long-term outcomes.
What is Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that primarily affect the skin, joints, and blood vessels. There are 13 different types of EDS, each with unique characteristics. Despite the variations in symptoms, common features across all types include joint hypermobility (being "double-jointed"), skin hyperextensibility (skin that stretches easily), and tissue fragility (leading to easy bruising). While there is no cure for EDS, effective management through physiotherapy and pain management strategies can significantly improve quality of life for those affected.
What is Joint Hypermobility?
Joint hypermobility refers to a condition where a person’s joints can move beyond the normal range of motion. Individuals with hypermobility may or may not experience discomfort/pain, while others face joint instability. Joint instability occurs when the bones within the joints aren’t properly held together, leading to a higher risk of dislocations, subluxations (partial dislocations), and sprains, which can result in both acute and chronic pain.
What is Tissue Fragility?
Tissue fragility is when the body’s organs and tissues are more susceptible to damage. This can manifest as easily bruised skin or prolonged healing times for wounds. Individuals with EDS often experience these symptoms due to the inherent weaknesses in their connective tissues.
What is Skin Hyperextensibility?
Skin hyperextensibility refers to the ability of the skin to stretch beyond its normal elasticity. This is often assessed by pinching the skin and pulling it away from the surface. If the skin stretches more than 1.5 cm, it is considered hyperextensible, a common trait in individuals with EDS.
Understanding an EDS Flare-Up
An EDS flare-up is characterized by an exacerbation of symptoms, including increased pain, fatigue (both physical and mental), and general discomfort. These flare-ups may occur due to a variety of factors, including stress, anxiety, depression, hormonal changes (such as menstruation, pregnancy, or menopause), or physical strain, such as overloading in the gym.
How Do I Manage an EDS Flare-Up?
Managing an EDS flare-up requires a holistic approach, addressing both physical and mental health. Key strategies include:
Stress and anxiety management through relaxation techniques such as meditation.
Engaging in gentle exercises like Clinical Pilates to improve joint stability and reduce pain.
Using pharmaceutical pain management when necessary.
Taking time to rest and using heat packs to alleviate discomfort.
Pacing helps prevent EDS flare-ups by spreading high-energy activities throughout the week, reducing the risk of over-exertion and minimizing the likelihood of symptom flare-ups.
Case Study: A Real-Life Story of EDS Management
As part of my continued research on hypermobility and EDS, I interviewed a 22-year-old woman who had struggled with multiple random dislocations, chronic pain, extreme fatigue, and Postural Orthostatic Tachycardia Syndrome (POTS) before being diagnosed with EDS at the age of 22. She shared her journey of feeling misunderstood and often judged, as many people around her didn’t believe or recognize her condition due to a lack of awareness.
Now, this individual is dedicated to educating and empowering others with EDS, making them feel heard and understood. Through consistent management, including Clinical Pilates twice a week for joint stabilization, daily meditation to manage stress, and pacing her schedule between her university studies and work at a pharmacy, she has found significant improvement in her symptoms.
Hypermobility Ehlers-Danlos Syndrome vs. Hypermobility Spectrum Disorders
While both Hypermobile EDS and Hypermobility Spectrum Disorders (HSD) involve joint hypermobility, they differ in their underlying causes and severity.
Hypermobile EDS (hEDS) is an inherited genetic condition that causes hypermobility in connective tissues, including joints, skin, and blood vessels. Symptoms vary widely between individuals and may include co-morbidities like postural orthostatic hypotension, irritable bowel syndrome, and mast cell activation syndrome.
Hypermobility Spectrum Disorders range from individuals who experience no symptoms other than joint hypermobility to those who suffer from more severe symptoms associated with joint instability and other systemic issues related to hypermobility.
Common symptoms of both conditions include:
Abdominal cramping, bloating, and gastrointestinal issues
Anxiety and mood disorders
Bladder problems
Chronic pain and fatigue
Dizziness, especially upon standing
Easy bruising and skin healing difficulties
Dislocations, subluxations, and arthritis
Management Strategies for Hypermobile EDS and Hypermobility Spectrum Disorders
1. Physical Activity: Regular physical activity is crucial, but it is important to avoid exercises that put excessive strain on the joints. Recommended activities include Clinical Pilates, swimming, or gentle walking.
2. Gentle Stretching: While some individuals may feel the urge to overstretch due to joint instability, it is important to focus on slow, dynamic stretching to release muscle tightness and avoid dislocations.
3. Strength and Balance Training: Building muscle strength around the joints can enhance stability, reducing the risk of dislocations and subluxations. Balance exercises also help improve joint control and coordination.
4. Bracing/ compression garments: Using braces during physical activities can provide additional support to hypermobile joints and prevent injury. Physiotherapists can recommend the appropriate type of brace that suits you.
5. Lifestyle Factors:
Ensure adequate sleep (7-9 hours) to aid in recovery.
Incorporate relaxation practices, such as meditation or massage, to manage pain and stress.
Monitor daily activities and avoid overexertion, pacing work and study schedules to prevent exhaustion.
6. Other Techniques: In addition to exercise, other management techniques such as heat or ice therapy, pharmaceutical pain management, and seeking guidance from a physiotherapist can provide relief and enhance quality of life.
Where Can I Find More Information?
For further resources on EDS and hypermobility spectrum disorders, consider visiting:
How Can Physiotherapy, Exercise and Clinical Pilates Help Those with EDS and Hypermobility Spectrum Disorders?
A physiotherapist plays a key role in managing Ehlers-Danlos Syndrome (EDS) and hypermobility spectrum disorders through a variety of tailored interventions. They create personalized strength, proprioception, and Clinical Pilates programs to target pain, muscle spasms, and joint instability. By strengthening the muscles surrounding the joints, these exercises enhance joint stability, reduce the risk of dislocations and subluxations, and improve proprioception (body awareness).
Physiotherapists also guide pain and load management to facilitate recovery and prevent exacerbations. Gentle manual therapy reduces pain and joint instability, improving movement and comfort, while self-correction techniques help you safely manage and realign dislocations at home. Compression garments or braces may be recommended to support affected areas while maintaining strength and mobility.
Additionally, gentle exercises paired with breathing techniques help relieve pain, calm the nervous system, and reduce stress. Physiotherapists provide advice on managing EDS-related co-morbidities, ensuring you can continue enjoying activities safely, and collaborate with other healthcare providers to offer holistic, comprehensive care addressing all aspects of your health.
Conclusion: A Holistic Approach to Managing Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders
Managing EDS and hypermobility spectrum disorders requires a comprehensive, individualized approach. While there is no cure, the right combination of physiotherapy, exercise, mental health support, and lifestyle modifications can significantly improve symptoms and help those affected lead fulfilling lives. Through education, self-management strategies, and support from healthcare professionals, people living with these conditions can better navigate the challenges they face.
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