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Understanding Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD)
Ehlers-Danlos Syndrome (EDS) is a group of genetic conditions affecting the body’s connective tissues, especially collagen. Collagen is a protein that gives strength and flexibility to our skin, joints, and other parts of the body. There are different types of EDS, and the most common one is called Hypermobile EDS (hEDS). Many people who don’t fully meet the diagnostic criteria for hEDS, but have similar symptoms, are diagnosed with Hypermobility Spectrum Disorder (HSD).
Both hEDS and HSD share common symptoms, such as overly flexible joints, frequent joint pain, sprains, and dislocations. People with these conditions often experience muscle pain, fatigue, anxiety, digestive issues, dizziness when standing, and challenges with balance and coordination. These symptoms arise because the collagen fibers in their tissues are weaker or less organized than usual, making their joints unstable and their skin more delicate. This is also referred to as dysautonomia and can be completely seperate for those without other hEDS symptoms.
Diagnosing EDS and HSD
Doctors diagnose hEDS and HSD mainly through clinical assessments since there’s currently no specific genetic test available. A detailed examination is done, often using tools like the Beighton Scale, which assesses how flexible someone’s joints are. Family history, physical symptoms, and ruling out other related conditions help doctors make a more accurate diagnosis.
New Insights into Collagen Structure in Ehlers-Danlos Syndrome
A recent study investigated the detailed structure of collagen in skin samples from individuals with Ehlers-Danlos Syndrome. Using advanced imaging methods, researchers discovered significant structural differences in the collagen fibers of EDS patients compared to healthy individuals. For instance, collagen fibers in EDS skin were irregular, disorganized, and weaker at the microscopic level, helping explain why skin tears easily and joints are frequently unstable. These structural changes were especially clear in hEDS patients, providing new insights that might help develop clearer diagnostic criteria and treatment strategies in the future.
Treatment and Management of EDS and HSD
Currently, there’s no cure for EDS or HSD, but treatment strategies can significantly improve a patient’s quality of life. A comprehensive approach includes physical therapy, psychological support, occupational therapy, lifestyle changes, and particularly massage therapy and strength training, which together form an effective treatment strategy.
Massage therapy plays a key role by gently relaxing tight muscles, improving circulation, and promoting healing in damaged tissues. The gentle pressure from massage can ease muscle spasms, improve joint function, and help soothe the nervous system. Regular massage sessions help reduce chronic pain, manage stress and anxiety, and promote better sleep, all crucial for individuals with EDS or HSD. MLD (Manual Lymphatic Drainage) is another modality that has shown promise when working with those living in with an increase of lymphatic fluid. Moving this fluid can help calm the area, decrease inflammation, and allow for ease of movement.
A critical complement to massage is strength training. Strengthening the muscles around hypermobile joints provides essential stability, reducing the risk of injuries and dislocations. With stronger muscles, the body relies less on fragile ligaments and tendons for support. Exercises should be gentle at first and gradually increase in intensity, focusing on controlled movements and building body awareness.
The combination of massage and strength training addresses both the symptoms and the underlying causes of pain and instability in people with EDS and HSD. Massage helps muscles recover and relax after strength exercises, while strength training improves joint stability, making massage treatments more effective. This balanced approach helps individuals feel physically stronger, less anxious, and more confident in daily activities.
New Research on the Importance of Social Support
A recent study from the American Academy of Family Physicians (2024) found that people with Ehlers-Danlos Syndrome often use online and local support groups to share experiences and learn about their condition. These social networks help reduce feelings of isolation and provide important emotional support. Doctors can also use these networks to share educational materials and improve patient care.
Tranquil Therapy used to host a chronic pain meet up for those with autoimmune conditions and chronic pain. We would love to do that again for Lancaster check our our meet up page and reach out if you have any questions.
What have we found?
After working with clients who have hypermobile Ehlers-Danlos Syndrome (hEDS) since 2013, I’ve noticed a few consistent patterns. One of the most common frustrations I hear is: “I strength train, but it doesn’t seem to help.”
In many cases, the issue isn’t the effort. It’s the focus. Typical exercise routines often target large muscle groups but skip over smaller stabilizers that are essential for joint control. I’m not just talking about basic shoulder or hip exercises. I mean muscles like the ankle stabilizers, anterior tibialis, subscapularis, and even the diaphragm. These lesser-talked-about muscles can make a noticeable difference in how the body feels and functions, especially for someone navigating the unique demands of hEDS.
When we incorporate these into a treatment plan, sometimes alongside relaxing the overactive opposing muscles, it helps clients build a more intuitive understanding of their movement patterns. They start to notice what’s compensating, what’s missing, and how to move in a way that supports their body rather than bracing against it.
Another key insight: many hEDS clients experience pain not from weakness, but from muscle fatigue. Their muscles are often in a constant state of contraction, working overtime to create stability. What feels like weakness is sometimes just exhaustion. That’s why it’s important that our sessions strike the right balance. We want to reduce pain and tension while still maintaining the tone the body relies on for control and safety.
This kind of work takes clear communication, thoughtful pacing, and a deep understanding of how hypermobility affects the nervous system and connective tissue. When we get it right, it can be life-changing.
Improving Diagnosis and Support
These new findings and treatment insights highlight the importance of better education, early diagnosis, and effective treatments for EDS and HSD. Clearer diagnostic methods based on collagen structure and more awareness about how symptoms can be managed through massage, physical therapy, and strength training could lead to better outcomes for patients. Continued research, patient support networks, and improved healthcare provider understanding remain essential for enhancing the lives of people living with these conditions. A great resource for those living with EDS is The Ehlers Danlos Society.
I hope this gave you a new understanding of HEDS and Hypermobility Spectrum Disorder. Please visit this page regarding resources for those with hEDS, Fibromyalgia, and POTs. Want a checklist? Visit this page for a comprehensive self care checklist.
References:
- Yew, K. S., Kamps-Schmitt, K. A., & Borge, R. (2021). Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.
- American Family Physician, 103(8), 481–492. American Academy of Family Physicians. (2024). Community Social Networking for Ehlers-Danlos Syndrome. Health Education & Behavior.
- Neshatian, M., Mittal, N., Huang, S., Ali, A., Khattignavong, E., & Bozec, L. (2024). Investigation of dermal collagen nanostructures in Ehlers-Danlos Syndrome (EDS) patients. PLOS ONE, 19(8).