Frozen Shoulder in People with Hypermobile EDS: Causes and Management

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Frozen shoulder, medically known as adhesive capsulitis, is a painful condition that limits shoulder movement. For people with hypermobile Ehlers-Danlos syndrome (hEDS), this condition can be especially frustrating and recurring. Understanding why frozen shoulder happens more often in those with hEDS and how to manage it can help improve quality of life and reduce discomfort.

Frozen shoulder causes stiffness and pain in the shoulder joint, making everyday tasks like reaching, dressing, or lifting difficult. When combined with hypermobile EDS, a connective tissue disorder that causes joint hypermobility and instability, the risk of developing frozen shoulder increases.

Since Hypermobile EDS is a genetic disorder affecting collagen, a protein that provides strength and elasticity to connective tissues. People with hEDS often have joints that move beyond the normal range, which can lead to frequent dislocations, pain, and early joint wear.

The connective tissue is weaker and more elastic, the shoulder joint capsule—the tissue surrounding the joint—can become unstable. This instability can cause micro-injuries and inflammation, which may trigger frozen shoulder. The joint capsule may thicken and tighten as a protective response, leading to stiffness and limited movement.

Frozen shoulder usually develops in three stages: freezing (painful), frozen (stiffness), and thawing (recovery). In people with hEDS, this process can repeat or last longer due to several factors:

• Joint instability: Loose joints move excessively, causing repeated irritation and inflammation of the shoulder capsule.

• Tissue fragility: Weak connective tissue heals slowly and may scar, increasing the chance of stiffness.

• Muscle imbalances: To compensate for unstable joints, muscles may tighten or weaken, affecting shoulder mechanics.

• Inflammation: Chronic inflammation from repeated injuries can lead to thickening of the joint capsule.

• Delayed healing: Collagen abnormalities slow down tissue repair, prolonging symptoms.

  
  

These factors create a cycle where the shoulder becomes painful and stiff, then partially recovers, only to become frozen again with new injuries or overuse.

If you have hypermobile EDS and notice these signs, frozen shoulder may be returning:

• Gradual onset of shoulder pain, especially at night

• Increasing difficulty moving the shoulder in all directions

• Stiffness that limits daily activities like reaching overhead or behind the back

• A feeling of tightness or “catching” in the shoulder joint

• Muscle weakness around the shoulder

  
  

Early recognition allows for quicker intervention and better outcomes.

Managing frozen shoulder in the context of hypermobile EDS requires a careful, tailored approach. Here are practical strategies:

1. Work with a Specialist

Consult a healthcare provider familiar with both frozen shoulder and hypermobile EDS. This may include a rheumatologist, physical therapist, or orthopedic specialist. They can create a personalized plan that considers joint hypermobility and tissue fragility.

2. Gentle Physical Therapy

Physical therapy focuses on maintaining shoulder mobility without causing further injury. Therapists use gentle stretching and strengthening exercises to improve joint stability and reduce stiffness. Avoid aggressive stretching, which can worsen symptoms in hEDS.

3. Pain Management

Pain control is essential to allow movement and therapy. Options include:

• Over-the-counter pain relievers like acetaminophen or NSAIDs (nonsteroidal anti-inflammatory drugs)

• Heat or cold therapy to reduce pain and inflammation

• In some cases, corticosteroid injections may be recommended to reduce inflammation

  
  

Always discuss medication use with your healthcare provider.

4. Protect the Joint

Avoid activities that strain the shoulder or cause repetitive injury. Use supportive braces or taping if recommended by your therapist to improve joint stability during movement.

5. Home Exercises

Daily gentle exercises can help maintain shoulder mobility. Examples include:

• Pendulum swings: Lean forward and let the arm hang, gently swinging it in small circles

• Wall climbs: Use fingers to “walk” the hand up a wall to increase range of motion

• Shoulder blade squeezes: Strengthen muscles around the shoulder blade to support the joint

  
  

Consistency is key, but stop any exercise that causes sharp pain.

6. Monitor and Adjust

Because frozen shoulder can recur, regular check-ins with your healthcare team help adjust treatment as needed. Early treatment of flare-ups can prevent prolonged stiffness.

If conservative management does not improve symptoms after several months, your doctor may suggest other options:

• Manipulation under anesthesia: The shoulder is gently moved while you are sedated to break up scar tissue.

• Arthroscopic surgery: Minimally invasive surgery to release tight joint capsule tissue.

  
  

These procedures carry risks and require careful consideration, especially in hypermobile EDS, where healing may be slower.

Managing frozen shoulder alongside hypermobile EDS involves patience and a proactive approach. Here are some lifestyle tips:

• Maintain overall joint health with low-impact activities like swimming or cycling.

• Focus on balanced nutrition to support tissue repair.

• Practice good posture to reduce shoulder strain.

• Use ergonomic tools and supports during daily tasks.

• Stay informed about your condition and advocate for your care.

  
  

Frozen shoulder can be a recurring challenge for people with hypermobile EDS due to joint instability and tissue fragility. Understanding the causes and following a careful management plan can reduce pain and improve shoulder function. If you experience symptoms, seek care early and work closely with specialists who understand the unique needs of hypermobile EDS. Taking control of your shoulder health can help you stay active and maintain your quality of life.