Ehlers-Danlos Syndromes: Recommended Exercises, Principles, and Precautions

What exercises are good for EDS?

For individuals with Ehlers-Danlos Syndromes (EDS), exercise is a cornerstone of management, focusing on enhancing joint stability, improving proprioception, building muscle strength, and managing pain and fatigue, all while prioritizing low-impact, controlled movements and avoiding joint hyperextension.

Understanding Ehlers-Danlos Syndromes and Exercise

Ehlers-Danlos Syndromes (EDS) are a group of hereditary connective tissue disorders primarily affecting collagen, the protein responsible for the strength and elasticity of tissues throughout the body. This systemic defect can lead to a wide range of symptoms, most notably joint hypermobility, joint instability, chronic pain, fatigue, and fragile tissues.

While the idea of exercise might seem counterintuitive for individuals with fragile joints and chronic pain, strategic and carefully prescribed physical activity is crucial. The primary goal of exercise for EDS is not to increase flexibility (which is often already excessive and detrimental) but rather to enhance joint stability through strengthening the periarticular muscles (muscles surrounding the joints), improving proprioception (the body's sense of position in space), and building overall functional strength and endurance. This approach helps to provide active support to hypermobile joints, reduce the risk of subluxations and dislocations, mitigate chronic pain, and improve quality of life.

Core Principles of Exercise for EDS

Before delving into specific exercises, it's vital to understand the foundational principles that must guide any exercise program for individuals with EDS:

• Prioritize Joint Stability: The focus is on strengthening the muscles that support and stabilize joints, not on increasing range of motion.
• Low-Impact Activities: Minimize stress on joints. High-impact activities can exacerbate pain and injury.
• Controlled Movements: Avoid ballistic, sudden, or uncontrolled movements. Every exercise should be performed with deliberate precision.
• Focus on Proprioception: Improving body awareness helps prevent injuries and improve motor control.
• Gradual Progression: Start with very low intensity and duration, gradually increasing as tolerated. "Pacing" is crucial to avoid post-exertional malaise.
• Individualized Approach: What works for one person with EDS may not work for another. A tailored program is essential.
• Listen to Your Body: Pain is a warning sign. Differentiate between muscle fatigue and joint pain.

Recommended Exercise Modalities for EDS

The following exercise types are generally beneficial when performed correctly and with appropriate modifications:

Low-Impact Aerobic Exercise

These activities improve cardiovascular health, endurance, and mood without excessive joint stress.

• Walking: Start with short, flat walks, gradually increasing distance and duration. Good footwear is essential.
• Stationary Cycling: Provides cardiovascular benefits while supporting body weight, reducing joint load. Ensure proper bike fit to avoid hyperextension of knees or elbows.
• Elliptical Trainer: Offers a full-body workout with minimal impact, but ensure form is stable and joints are not hyperextended.
• Swimming and Aquatic Exercise: The buoyancy of water reduces gravitational stress on joints, making it an excellent option. Water resistance also provides gentle strengthening.

Strength Training for Joint Stability

The emphasis here is on building strength in the muscles surrounding vulnerable joints (shoulders, hips, knees, spine) to provide active support.

• Bodyweight Exercises:
  • Wall Slides: Gentle way to strengthen quadriceps and glutes.
  • Glute Bridges: Strengthens glutes and hamstrings, crucial for pelvic stability.
  • Clamshells: Targets hip abductors, vital for hip and knee stability.
  • Bird-Dog: Improves core and spinal stability, coordination.
• Resistance Bands: Offer variable resistance, which can be less jarring than free weights.
  • Band Rows: Strengthens upper back muscles.
  • Band Pull-Aparts: Improves shoulder stability and posture.
• Light Free Weights/Dumbbells: When appropriate, use very light weights with high repetitions.
  • Bicep Curls / Tricep Extensions: Focus on controlled movements, avoiding locking out elbows.
  • Shoulder Press (seated or against wall): Emphasize control and scapular stability.
• Key Strength Training Principles:
  • Avoid Locking Out Joints: Always maintain a slight bend in knees and elbows.
  • Focus on Eccentric Control: The lowering phase of an exercise should be slow and controlled.
  • High Repetitions, Low Resistance: Promotes muscle endurance and control rather than maximal strength.

Proprioception and Balance Training

Improving the body's awareness in space is critical for preventing falls and injuries.

• Single-Leg Stance: Start with support (e.g., holding a wall), progress to unsupported.
• Standing on Unstable Surfaces: Foam pads or balance discs can challenge proprioception, but introduce cautiously.
• Tai Chi: A low-impact mind-body practice that inherently improves balance, coordination, and body awareness through slow, controlled movements.

Core Stability Exercises

A strong and stable core provides a foundation for all movement and protects the spine.

• Pelvic Tilts: Gentle activation of deep core muscles.
• Dead Bug: Excellent for abdominal control without straining the neck or back.
• Gentle Planks (Modified): Start on knees, or against a wall, focusing on maintaining a neutral spine. Avoid sagging or arching.
• Diaphragmatic Breathing: Engages the deep core muscles and promotes relaxation.

Gentle Flexibility and Mind-Body Practices

While hypermobility is common, some muscles can become tight due to compensatory patterns. Gentle stretching for genuinely tight muscles can be beneficial, but never stretch into hypermobile ranges.

• Modified Yoga and Pilates: These can be excellent if taught by instructors knowledgeable about EDS. Modifications are paramount to prevent hyperextension and overstretching. Focus on stability, core engagement, and body awareness rather than extreme poses.
• Static Stretching: Hold stretches for 20-30 seconds, only to the point of a gentle pull, never pain. Focus on areas like hip flexors, hamstrings, or chest if genuinely tight.

Exercises to Approach with Caution or Avoid

Certain activities pose a higher risk for individuals with EDS and should generally be avoided or approached with extreme caution and professional guidance:

• High-Impact Activities: Running, jumping, plyometrics, contact sports, high-impact aerobics. These can lead to joint damage and pain.
• Heavy Lifting/Powerlifting/Olympic Lifting: High loads put excessive stress on connective tissues and joints.
• Ballistic Stretching or "Extreme" Flexibility Training: Activities that push joints beyond their safe range of motion or involve bouncing.
• Uncontrolled, Rapid Movements: Activities that lack precise control, increasing the risk of subluxation or dislocation.
• Activities with High Fall Risk: Unless balance is exceptionally strong and supervised.

Key Considerations for Safe and Effective Exercise

• Start Slow and Progress Gradually: This cannot be overemphasized. Begin with minimal intensity and duration (e.g., 5-10 minutes of walking, 5 repetitions of an exercise), and slowly increase as tolerated over weeks or months.
• Listen to Your Body and Pacing: Differentiate between healthy muscle fatigue and joint pain. Stop if you experience sharp or unusual pain. Pacing your activity throughout the day and week can help manage fatigue.
• Focus on Form Over Range of Motion: Correct technique is paramount to protect joints. It's better to do fewer repetitions with perfect form within a safe range than more repetitions with poor form or excessive range.
• Warm-up and Cool-down: Always include a gentle warm-up (5-10 minutes of light cardio or dynamic stretches) and a cool-down (gentle static stretches if appropriate, or simply rest).
• Hydration and Nutrition: Proper hydration and a balanced diet support energy levels and tissue health.
• Utilize Bracing/Support (If Recommended): In some cases, temporary bracing for specific joints might be recommended by a physical therapist during exercise.

The Importance of Professional Guidance

Given the complexity and variability of EDS, consulting with healthcare professionals is paramount before initiating or significantly changing an exercise routine.

• Physician: Your primary care physician or specialist (e.g., geneticist, rheumatologist) can provide medical clearance and general guidance.
• Physical Therapist (PT): A physical therapist experienced with hypermobility disorders is invaluable. They can perform a thorough assessment, identify specific joint instabilities, teach proper body mechanics, and design a truly individualized exercise program.
• Occupational Therapist (OT): Can help with adapting daily activities and energy conservation strategies.
• Certified Exercise Physiologist or Personal Trainer: If they have a strong understanding of EDS and are willing to work closely with your PT.

Exercise is a powerful tool for managing EDS, offering significant benefits for physical function, pain management, and overall well-being. By adhering to core principles of safety, stability, and gradual progression, individuals with EDS can build strength, improve their quality of life, and navigate their daily activities with greater confidence and less discomfort.