The Vital Role of Physical Therapy and Exercise

Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that primarily affect the skin, joints, and blood vessels. One of the most common forms of EDS is the hypermobile type (hEDS), which is characterized by joint hypermobility—where joints move beyond the normal range of motion—leading to frequent joint dislocations, chronic pain, and a host of other complications. Managing EDS, especially hEDS, requires a comprehensive approach that includes physical therapy (PT) and regular exercise, as emphasized in the work of Leslie Russek, DPT, PhD, a recognized expert in the field.

Hypermobility and Its Challenges

People with hypermobility often face unique challenges due to the excessive range of motion in their joints. While it may seem advantageous to be more flexible, hypermobility can lead to joint instability, increased risk of injury, and persistent musculoskeletal pain. For individuals with EDS, these issues are compounded by the underlying connective tissue abnormalities, making it difficult to maintain joint stability and function.

Key Challenges of Hypermobility in EDS:

• Joint Instability: Hypermobile joints are prone to subluxations (partial dislocations) and full dislocations, which can cause pain, swelling, and damage to the surrounding tissues.
• Chronic Pain: The repetitive strain on muscles, ligaments, and tendons often leads to chronic pain, making everyday activities a challenge.
• Fatigue: Maintaining joint stability requires more effort, leading to increased fatigue and reduced endurance.
• Proprioceptive Difficulties: People with hypermobility may have a reduced sense of proprioception (the body’s ability to perceive its position in space), making coordination and balance more difficult.

 The Importance of Physical Therapy in Managing EDS and Hypermobility

Physical therapy plays a critical role in managing the symptoms and complications of EDS, particularly for those with hypermobility. Leslie Russek, DPT, PhD, a well-respected physical therapist and researcher, has extensively studied the benefits of PT and exercise for individuals with EDS. Her work emphasizes that while exercise must be carefully tailored to each patient’s abilities and limitations, it is essential for improving joint stability, reducing pain, and enhancing overall quality of life.

Benefits of Physical Therapy for EDS and Hypermobility:

• Joint Stabilization: PT focuses on strengthening the muscles surrounding hypermobile joints, providing better support, and reducing the risk of dislocations and injury.
• Pain Management: Through targeted, carefully executed exercises, stretching, and manual therapy, physical therapy can help manage chronic pain and prevent flare-ups.
• Improved Proprioception: Exercises designed to enhance proprioception can help individuals with EDS improve their balance and coordination, reducing the risk of falls and injuries.
• Increased Functionality: PT aims to enhance daily functioning by gradually increasing strength and endurance, making it easier to perform everyday tasks without excessive fatigue or pain.
• Education and Awareness: Physical therapists educate patients on body mechanics, posture, and movement strategies that can help minimize stress on hypermobile joints.

The Role of Exercise in Managing EDS and Hypermobility

In addition to physical therapy, regular exercise is crucial for individuals with EDS. However, it’s important to approach exercise with caution, as overly aggressive or inappropriate workouts can exacerbate symptoms and cause post-exertional malaise (PEM). Leslie Russek advocates for a balanced exercise program that includes low-impact aerobic activities, strength training, and flexibility exercises, all tailored to the individual’s needs.

Key Components of an Exercise Program for EDS:

• Low-Impact Aerobic Exercise: Activities like swimming, cycling, or using an elliptical machine are gentle on the joints while improving cardiovascular health and overall endurance.
• Strength Training: Focus on strengthening the core muscles, as well as the muscles around the hips, knees, and shoulders, to improve joint stability. Resistance bands, light weights, and bodyweight exercises are often recommended.
• Flexibility and Stretching: Gentle dynamic stretching can help maintain flexibility without overextending the joints. It’s essential to perform stretches within a comfortable range of motion to avoid injury.
• Proprioceptive Training: Balance exercises, such as standing on one leg or using a balance board, can enhance proprioception and coordination.

Working with a Specialist

Given the complexity of EDS and hypermobility, it’s essential to work with a healthcare provider who understands these conditions. A physical therapist with expertise in EDS and hypermobility, can develop a personalized plan that considers the unique needs of each patient. This tailored approach ensures that patients receive the most effective care, helping them to manage their symptoms, improve their quality of life, and maintain their independence. It can also prevent injury from therapists who may ask you to perform exercise or stretches that can be harmful for hypermobility in general.

For more information on managing EDS through physical therapy and exercise, consult with a healthcare provider specializing in connective tissue disorders, and explore the tremendous resources from experts like Leslie Russek, including her Hypermobility 101 program and many other resource-rich handouts on hypermobility. Your journey toward better health and well-being starts with the right support and guidance.