What is Ehlers-Danlos Syndrome and how does it impact movement?

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that affect the strength and elasticity of collagen throughout the body. The most common form seen in physiotherapy clinics is hypermobile EDS (hEDS), which leads to joints that move too far, too easily and often beyond their safe control range.

Because connective tissues are weaker, people with EDS may experience joint instability, frequent sprains or subluxations, poor proprioception (body awareness) and difficulty with repetitive or sustained movements. This can lead to pain, fatigue and a frustrating cycle of activity followed by flare-ups.

Common movement challenges in people with EDS

While symptoms vary, most adults with EDS report a core set of physical difficulties that make daily life harder. These include:

• Frequent joint subluxations or instability, particularly in the shoulders, knees, ankles or fingers
  
  
• Chronic fatigue, often linked to poor muscle support or inefficient movement strategies
  
  
• Generalised pain, especially after prolonged sitting, standing or walking
  
  
• Delayed recovery from minor injuries
  
  
• Balance and coordination issues, increasing the risk of falls
  
  

Some also report jaw instability or TMJ pain, which may be addressed through specialised jaw physiotherapy. Women may notice pelvic floor issues postnatally or during hormonal shifts, making women’s health physiotherapy an important part of care.

How physiotherapy helps manage EDS safely

Physiotherapy for EDS is not about curing flexibility. It is about restoring control, strength and confidence. Treatment is always tailored to your needs, energy levels and goals.

Your physiotherapist will focus on:

• Motor control training to stabilise joints in mid-range
  
  
• Proprioceptive retraining to improve joint awareness and response
  
  
• Strength-building in safe positions, often using low-load, closed-chain exercises
  
  
• Fatigue management, adjusting your plan daily if needed
  
  
• Pacing education to prevent the boom–bust cycle
  
  

These strategies are adapted over time, helping you move forward without pushing into flare-ups.

What does a tailored physiotherapy plan for EDS include?

Everyone with EDS presents slightly differently, which is why one-size-fits-all rehab often fails. Your physiotherapy plan should evolve with your symptoms, lifestyle and tolerance.

A typical EDS rehab plan may include:

• A detailed initial assessment covering movement history, past injuries, joint control and fatigue triggers
  
  
• Control-focused exercises — often beginning in neutral spine or supported positions
  
  
• Progressive strength work, staying away from end-range loading
  
  
• Balance and proprioception training, including closed-eye work or uneven surfaces
  
  
• Pacing tools and rest-to-activity ratios that fit your energy profile
  
  
• Optional guidance on bracing, taping or footwear adjustments if helpful
  
  

Supervision and feedback are essential. Many patients feel stronger and safer within just a few sessions.

Who should be involved in your EDS care team?

EDS often requires a collaborative approach. While physiotherapists play a key role in building strength and protecting joints, other professionals may be involved in diagnosis and support.

• GPs or rheumatologists assist with formal diagnosis, pain medication and systemic symptom management
  
  
• Occupational therapists help with energy conservation and equipment for daily living
  
  
• Psychologists or pain specialists provide education and tools for managing chronic pain or fear of movement
  
  
• Dietitians can support patients struggling with gut issues, energy deficits or connective tissue nutrition
  
  

At Active Physiotherapy Newtown & Darlinghurst, we communicate closely with referring providers to ensure your plan is safe, consistent and adapted over time.

Tracking Your Progress in EDS Rehabilitation

For EDS patients, success is not always about pain scores. It is about how your body functions under load and in daily life. We track progress through:

• Fewer dislocations or instability episodes
  
  
• Better joint control in challenging positions
  
  
• Higher tolerance for activity like stairs, desk work or shopping
  
  
• Reduced recovery time after exercise
  
  
• Improved confidence when moving outside of physio sessions
  
  

At Active Physiotherapy Newtown & Darlinghurst, we reassess regularly and adjust programs so they remain relevant as you improve.

What should be avoided during EDS rehab?

Many patients with EDS arrive into our clinics frustrated, having been told to stretch more or “just exercise normally.” Unfortunately, these strategies often do more harm than good.

Avoid:

• Overstretching, especially in already mobile joints
  
  
• Unsupervised high-intensity training that fatigues the stabilisers
  
  
• Jumping or dynamic impact movements too early
  
  
• Passive supports like braces used long-term without strengthening
  
  

Instead, focus on slow, quality-controlled movements and gradual progression. Fear of movement is common, but the right program can reduce that fear with each small win.

Returning to Exercise Safely

Returning to exercise is possible and important, but should be structured carefully. We follow a staged approach:

1. Motor control and postural training
   
   
2. Strengthening in safe planes, focusing on closed-chain work
   
   
3. Balance and proprioception challenges under low load
   
   
4. Graded introduction of impact or dynamic movement
   
   
5. Return to specific activities, from yoga to running
   
   

Low-impact activities like Pilates, hydrotherapy or stationary cycling can be excellent entry points. Our exercise therapy services include these tailored progressions.

Begin Your Personalised EDS Physiotherapy Journey Today!

Physiotherapy does not fix your connective tissue, but it can absolutely restore your control, reduce pain and help you feel more confident and capable in your body.

If you have been putting off rehab or have struggled with unsafe programs in the past, our team at Active Physiotherapy will guide you every step of the way.

Learn more about ONERO™ Classes & book your assessment today!