Hypermobile Ehlers-Danlos Syndrome (HEDS) and hypermobility spectrum disorder (HSD) are conditions that affect the body’s connective tissue – which is the soft tissue that supports organs, skin, blood vessels etc. While these conditions can bring challenges, they’re also more common than many people realise. Often misunderstood or overlooked, EDS and joint hypermobility syndrome can show up in different ways and at any age.
What is joint Ehlers Danlos Syndrome?
The Ehlers-Danlos syndromes (EDS) are a group of 13 connective tissue disorders and are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with some features seen across all types of EDS. One of the most common forms of EDS is hypermobile EDS. It’s important to know that EDS isn’t always obvious from the outside. Many people look perfectly healthy but live with daily challenges such as:
- Chronic joint pain- from joints that are overly flexible, can dislocate or move too far, causing pain and frequent injuries. Even simple tasks like walking, writing, or reaching can lead to strain or fatigue.
- Constant tiredness-The body works overtime to keep everything stable, which can leave people feeling drained even after a good night’s sleep.
- Digestive issues, dizziness, bruising, and slow healing.
Despite these challenges, with the right support and care, people with hEDS can find ways to manage symptoms and live full, active lives.
What is Joint Hypermobility?
Joint hypermobility simply means that a person’s joints move beyond the normal range of motion. Think of someone who can bend their thumb back to touch their forearm or perform extreme yoga poses with ease. For some, it’s harmless and doesn’t cause any pain or issues (Benign Joint Hypermobility.) However, for some people, joint hypermobility can also mean having joint instability, chronic pain, fatigue, joint dislocations and other systemic issues. When hypermobility comes with these kinds of problems, it may be part of a larger condition, such as Hypermobility Spectrum Disorder (HSD) or Hypermobile Ehlers-Danlos Syndrome (hEDS).
How is HSD different to hEDS?
Hypermobility Spectrum Disorder (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) share many symptoms, but there are important differences in how they’re diagnosed and classified.
What They Have in Common:
- Joint hypermobility
- Chronic joint pain
- Fatigue
- Frequent sprains, dislocations, or soft tissue injuries
- Similar approaches to treatment and symptom management
The Key Difference: Diagnosis
The main difference lies in the diagnostic criteria:
- hEDS has a stricter, more specific set of criteria. It includes not just joint hypermobility and pain, but also other signs (like family history, skin features, and systemic symptoms).
- HSD is diagnosed when someone has significant symptoms related to joint hypermobility, but doesn’t meet all the criteria for hEDS.
While hEDS is part of the Ehlers-Danlos Syndrome group, HSD is not, but that doesn’t make it any less real or serious. Both can significantly impact daily life, and people with HSD often face the same challenges as those with hEDS.
How are these managed?
There is no cure for these conditions, but symptoms can be managed through:
- Physical therapy to strengthen joints and stabilize movement
- Pain management (medications, pacing, heat therapy, etc.)
- Lifestyle adaptations, like joint braces or mobility aids
- Mental health support, including therapy or support groups
- Specialist care, such as cardiologists, rheumatologists, and gastroenterologists
Physiotherapy can help to:
- Improve Joint Stability- Physiotherapy focuses on strengthening the muscles around those joints, helping to hold them in place and reduce daily strain.
- Build Muscle Without Overloading the Body- People with hEDS often struggle with standard strength training routines. A physiotherapist can guide you through low-impact, controlled exercises that build strength gradually without triggering flare-ups.
- Reduce Pain and Prevent Injury- Through targeted movement, posture correction, and gentle conditioning, physiotherapy can help minimize chronic pain and reduce the risk of injuries from joint instability or poor biomechanics.
- Re-train Movement Patterns- Many people with hypermobility unknowingly move in ways that put stress on their joints. Physiotherapy helps re-train the body to move more safely and efficiently, reducing joint wear and tear over time.
- Support Autonomic and Systemic Symptoms- Some physiotherapists are trained to help manage symptoms like dizziness, fatigue, or POTS, which often come alongside hEDS. This might include graded exercise therapy, pacing strategies, or gentle cardio tailored to your capacity.
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