Ehlers-Danlos Syndrome: Recommended Exercises, Principles, and What to Avoid

What exercises help with EDS?

For individuals with Ehlers-Danlos Syndrome (EDS), exercise is crucial for building joint stability, improving proprioception, and enhancing overall function, focusing on low-impact, controlled movements that prioritize muscle strengthening and core stability over flexibility or high intensity.

Understanding Ehlers-Danlos Syndrome (EDS) and Exercise

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders primarily affecting collagen, the most abundant protein in the body. This fundamental defect leads to widespread symptoms, most notably joint hypermobility, skin hyperextensibility, and tissue fragility. For those with EDS, particularly the hypermobile type (hEDS), the laxity of ligaments and tendons means joints are inherently less stable, increasing the risk of subluxations (partial dislocations), dislocations, and chronic pain.

While the idea of exercise might seem counterintuitive or even risky for hypermobile individuals, it is, in fact, an indispensable component of managing EDS. The goal is not to stretch or increase flexibility (which is often already excessive and detrimental), but rather to build the muscular strength and endurance around joints that can compensate for lax connective tissues. This "muscle splinting" provides crucial support, improves proprioception (the body's sense of position in space), reduces pain, and enhances functional independence. However, exercise must be approached with extreme caution, individualization, and often under professional guidance.

Core Principles for Exercising with EDS

A successful exercise program for EDS must adhere to specific principles to maximize benefits and minimize risks:

• Individualization is Key: No two individuals with EDS are exactly alike. Exercise programs must be tailored to an individual's specific symptoms, joint involvement, and tolerance levels. What works for one person may not be appropriate for another.
• Prioritize Low-Impact Activities: High-impact exercises (running, jumping, plyometrics) place excessive stress on fragile joints and should generally be avoided. Focus on activities that minimize jarring and repetitive stress.
• Emphasize Gradual Progression ("Start Low, Go Slow"): Begin with very low intensity and short durations, gradually increasing volume and intensity over weeks and months. Rapid progression can lead to injury or exacerbation of symptoms.
• Focus on Proprioception and Balance: Due to joint laxity, the proprioceptive feedback system can be impaired. Exercises that challenge balance and body awareness are vital for improving joint stability and reducing fall risk.
• Strengthen, Don't Stretch: The aim is to build muscular support around joints, not to increase range of motion. Avoid passive or aggressive stretching, which can destabilize hypermobile joints further. Active range of motion within a pain-free, controlled range is acceptable.
• Listen to Your Body: Pain is a critical signal. Differentiate between muscle fatigue or mild soreness and sharp, joint-related pain. If an exercise causes joint pain, subluxation, or unusual discomfort, stop immediately.
• Seek Professional Guidance: A physical therapist experienced with EDS or hypermobility is invaluable for developing a safe and effective exercise plan, teaching proper form, and providing modifications.

Recommended Exercise Modalities for EDS

The following exercise modalities are generally well-suited for individuals with EDS, provided they are performed with appropriate modifications and caution:

• Aquatic Therapy / Swimming:

  • Benefits: The buoyancy of water reduces gravitational stress on joints, allowing for pain-free movement and strengthening. Water provides gentle resistance, making it ideal for building muscle endurance without impact. It's excellent for cardiovascular health and overall mobility.
  • Examples: Water walking, gentle swimming strokes (e.g., backstroke, breaststroke with modified kick to protect knees/hips), aqua aerobics (low-impact classes), specific therapeutic exercises performed in water with a physiotherapist. Avoid vigorous kicking or hyper-extending limbs.

• Pilates (Mat and Reformer):

  • Benefits: Pilates emphasizes core stability, controlled movement, precise muscle engagement, and proprioception. It focuses on strengthening the deep stabilizing muscles of the trunk and pelvis, which are crucial for supporting the spine and larger joints. The controlled nature of the movements makes it highly adaptable.
  • Examples: Pelvic tilts, abdominal bracing (transversus abdominis activation), modified single leg slides, gentle bridging. Reformer Pilates can be beneficial as the springs provide assistance and resistance, allowing for controlled movement with support. Ensure the instructor is aware of your EDS.

• Tai Chi and Modified Yoga:

  • Benefits: These practices emphasize slow, controlled movements, balance, breathwork, and mindfulness. They can improve proprioception, stability, and body awareness without placing excessive stress on joints. They also offer mental health benefits and pain management strategies.
  • Examples: Modified standing postures with support (e.g., holding onto a chair), chair yoga, focusing on gentle, non-extreme range of motion movements. Avoid deep stretches, inversions, or poses that require extreme joint angles.

• Resistance Training (Low Load, High Repetition):

  • Benefits: Building muscle strength and endurance is paramount for joint stability. Low weights or resistance bands with higher repetitions promote muscle endurance and control without overloading joints. This helps create the "muscle splinting" effect.
  • Examples:
    • Bodyweight: Wall push-ups, modified squats (partial range, not past 90 degrees, often with back support), glute bridges, bird-dog variations (controlled).
    • Resistance Bands: Rotator cuff strengthening (external/internal rotation), hip abduction/adduction, bicep curls, tricep extensions.
    • Light Dumbbells/Machines: Machine-based exercises can offer more stability than free weights. Focus on controlled movements, ensuring joints are not hyperextended at any point.

• Stationary Cycling / Elliptical:

  • Benefits: These provide cardiovascular benefits with minimal impact on joints. The seated position of stationary cycling supports the spine and lower limbs, while the elliptical provides a gliding motion that reduces stress compared to running.
  • Examples: Maintain a comfortable, upright posture. Use low resistance and a moderate, consistent pace. Avoid excessive speed or high resistance that could strain joints.

Exercises to Approach with Caution (or Avoid)

Certain exercises and activities are generally not recommended for individuals with EDS due to the high risk of injury or exacerbation of symptoms:

• High-Impact Activities: Running, jumping, plyometrics, high-impact aerobics, contact sports.
• Extreme Stretching or End-Range Movements: Any activity that pushes joints beyond their stable, controlled range of motion. This includes many traditional yoga poses, ballet, or gymnastics.
• Heavy Lifting, Especially with Free Weights: While resistance training is good, heavy loads can put excessive strain on hypermobile joints and connective tissues, increasing the risk of dislocation or injury. Free weights require more stabilizing muscle activation, which can be challenging and risky for unstable joints.
• Activities Requiring Rapid Changes in Direction or Unpredictable Movements: Sports like basketball, soccer, tennis, or vigorous dance can lead to sudden, uncontrolled joint movements.
• Overhead Lifting with Unstable Shoulders: If shoulder instability is an issue, overhead presses or pull-downs can be risky.

Key Considerations for a Successful EDS Exercise Program

• Professional Guidance is Paramount: Work closely with a physical therapist knowledgeable about EDS. They can assess your specific instabilities, teach proper form, and guide progression.
• Listen to Your Body Religiously: This cannot be overemphasized. Differentiate between healthy muscle fatigue and joint pain. If a joint feels unstable, "clunky," or painful, stop the exercise.
• Thorough Warm-up and Cool-down: Always begin with a gentle, low-impact warm-up to prepare muscles and joints, and finish with a cool-down that involves gentle movement rather than deep stretching.
• Hydration and Nutrition: Support your connective tissue health through adequate hydration and a balanced diet rich in protein, Vitamin C, and other nutrients essential for collagen synthesis.
• Pacing and Energy Conservation: Fatigue is a significant symptom for many with EDS. Learn to pace yourself, incorporate rest days, and avoid overexertion, which can lead to a "flare-up" of symptoms.
• Bracing and Taping: In some cases, temporary bracing or therapeutic taping (e.g., Kinesio tape) can provide additional support and proprioceptive input during exercise, but should be used under professional guidance.

Conclusion: Empowering Movement with EDS

Living with Ehlers-Danlos Syndrome presents unique challenges, but a well-designed, consistent, and cautious exercise program can significantly improve quality of life. By focusing on low-impact activities, building core and joint-stabilizing strength, enhancing proprioception, and always listening to your body, individuals with EDS can safely empower themselves through movement. Remember, the goal is not to achieve peak athletic performance, but to build a resilient, functional body that can better navigate the daily demands of life with hypermobility. Always consult with your healthcare team before beginning any new exercise regimen.