Ehlers-Danlos Syndromes (EDS): Activities to Avoid and Safe Movement Principles

What to avoid with EDS?

Individuals with Ehlers-Danlos Syndromes (EDS) must adopt a highly individualized and cautious approach to exercise, primarily avoiding high-impact activities, uncontrolled movements, and activities that push joints beyond their safe, stable range of motion, while prioritizing stability and proprioception.

Understanding Ehlers-Danlos Syndromes (EDS)

Ehlers-Danlos Syndromes (EDS) are a group of hereditary disorders affecting connective tissues, primarily collagen. This foundational protein provides structure and strength to skin, bones, blood vessels, and organs. In individuals with EDS, defective collagen leads to a range of symptoms, most notably joint hypermobility, tissue fragility, chronic pain, and fatigue. While joint laxity is a hallmark, the manifestation of EDS varies significantly between individuals, even within the same subtype. The primary concern from a movement perspective is the inherent instability of joints, making them prone to subluxations (partial dislocations) and dislocations, as well as chronic pain and injury.

General Principles for Exercise with EDS

Before delving into what to avoid, it's crucial to understand the guiding principles for safe and effective movement with EDS:

• Listen to Your Body: Pain is a critical warning sign, not something to push through. Discomfort or a feeling of instability should prompt immediate cessation of the activity.
• Prioritize Stability Over Mobility: The goal is to strengthen the muscles surrounding and supporting hypermobile joints, rather than increasing an already excessive range of motion.
• Low Impact: Minimize jarring forces on joints.
• Controlled, Deliberate Movements: Avoid fast, jerky, or ballistic movements. Focus on slow, mindful execution.
• Proprioception and Balance Training: Crucial for enhancing joint awareness and preventing falls or missteps.
• Gradual Progression: Start with very low intensity and duration, increasing extremely slowly and only if comfortable.
• Thorough Warm-up and Cool-down: Prepare tissues for activity and aid recovery.
• Hydration and Nutrition: Support overall health and connective tissue integrity.

Specific Exercises and Activities to Approach with Caution or Avoid

Given the inherent joint instability and tissue fragility in EDS, certain types of exercises and activities pose a higher risk of injury and should generally be avoided or approached with extreme caution and professional guidance:

• High-Impact Activities:

  • Running, jumping, plyometrics (box jumps, jump squats): These activities create significant ground reaction forces that can jar and destabilize hypermobile joints, especially in the knees, ankles, hips, and spine.
  • Contact sports (football, rugby, basketball, soccer): The unpredictable nature of these sports, involving collisions, sudden stops, and rapid changes in direction, presents a very high risk of dislocations, fractures, and concussions.
  • Aerobics with jumping/hopping: Similar to running, these can place excessive stress on joints.

• Uncontrolled or Ballistic Movements:

  • Kettlebell swings (especially heavy): While beneficial for some, the ballistic nature and momentum can be difficult to control, potentially leading to hyperextension or instability.
  • Fast, jerky movements: Any exercise performed without strict control over the range and speed of motion.
  • Sudden changes in direction or rapid pivoting: Common in many sports, these can easily lead to twisting injuries or dislocations, particularly in the knees and ankles.

• Activities Emphasizing Extreme Range of Motion (ROM) or Flexibility:

  • Deep, passive stretching: Pushing into end-range flexibility can overstretch already lax ligaments and destabilize joints.
  • Gymnastics, ballet (without significant modification): These disciplines often require extreme flexibility and end-range joint positions that are contraindicated for EDS.
  • Yoga or Pilates (unmodified): While beneficial for some when highly modified, traditional forms can encourage hyperextension and deep stretches that are unsafe. Focus should be on stability and strength, not flexibility.

• Heavy Lifting with Compromised Form:

  • Maximal lifts (1-rep max): The high load can place undue stress on joints and supporting structures, especially if form falters even slightly.
  • Free weights without adequate stability: Exercises like overhead presses or squats with heavy free weights require significant core and joint stability that may be challenging for those with EDS. Machines often offer more controlled movement patterns.

• Overly Repetitive Movements:

  • While low-impact and controlled movements are generally good, excessive repetition of any movement without adequate rest or varied activity can lead to overuse injuries, tendinopathy, or chronic pain in fragile tissues.

Movements and Positions to Minimize or Modify

Beyond specific activities, certain movement patterns and positions should be minimized or carefully modified:

• Hyperextension: Consciously avoid "locking out" joints like the knees, elbows, and spine. Maintain a slight bend to keep muscles engaged and protect the joint.
• Sustained End-Range Positions: Avoid holding stretches or positions that push joints to their extreme passive range.
• Unilateral Loading with Instability: Exercises that significantly load one limb while challenging balance (e.g., single-leg squats if not well-supported) should be approached with extreme caution or modified to ensure stability.
• Poor Posture: Chronic slouching or unsupported sitting/standing can exacerbate joint stress and pain, particularly in the spine, neck, and shoulders.
• Sudden Rotational Movements: Especially in the spine or knee, these can lead to sprains, strains, or dislocations.

Lifestyle and Daily Activity Considerations

Avoiding injury with EDS extends beyond formal exercise to daily life:

• Ergonomic Setup: Ensure your workspace, car, and home environment support good posture and minimize repetitive strain.
• Mindful Movement: Consciously move with control throughout the day. Avoid rushing or sudden movements.
• Appropriate Footwear: Wear supportive shoes that provide stability and cushioning. Orthotics may be beneficial for some.
• Pacing Activities: Avoid the "boom-bust" cycle where periods of overexertion are followed by severe pain and inactivity. Learn to pace yourself and take frequent breaks.
• Nutritional Support: While not a direct "avoidance," a diet rich in anti-inflammatory foods, adequate protein, Vitamin C, and other collagen-supporting nutrients can aid tissue health. Consult a healthcare provider or Registered Dietitian.
• Stress Management: Chronic stress can exacerbate pain and fatigue. Incorporate stress-reduction techniques.
• Adequate Sleep: Essential for tissue repair and pain management.

The Importance of Professional Guidance

Navigating exercise and daily movement with EDS requires expert guidance. It is paramount to:

• Consult a Physician: Always get clearance from your doctor, ideally one familiar with EDS, before starting or significantly changing any exercise program.
• Work with a Physical Therapist (PT) or Occupational Therapist (OT) Specializing in EDS: This is perhaps the most crucial step. A skilled therapist can assess your specific needs, identify problematic movement patterns, and design a safe, effective, and individualized exercise program focused on strengthening, stability, and proprioception. They can also teach you techniques for joint protection and pain management.
• Seek a Certified Personal Trainer (CPT) with EDS Experience: If you wish to work with a trainer, ensure they have a deep understanding of EDS, its precautions, and contraindications. They should work in conjunction with your medical team.
• Consider a Registered Dietitian (RD): For personalized nutritional advice to support connective tissue health and overall well-being.

Conclusion

Managing Ehlers-Danlos Syndromes is a lifelong journey that demands a proactive and informed approach to physical activity. The core principle is to avoid activities that place undue stress on hypermobile and fragile joints, while strategically building strength, stability, and proprioception. By understanding what to avoid, embracing controlled, low-impact movements, and consistently seeking guidance from qualified healthcare professionals, individuals with EDS can significantly reduce their risk of injury, manage pain, and improve their overall quality of life. Remember, the goal is not to avoid movement, but to move wisely and safely.