How to Exercise Smart with EDS

by

Ehlers-Danlos Syndrome (EDS) presents a unique set of challenges when it comes to physical activity. While movement is crucial for managing symptoms, the hypermobility and fragile connective tissues inherent to EDS mean that traditional exercise advice often falls short, or worse, can lead to injury. This guide cuts through the noise, offering clear, actionable strategies for exercising smart with EDS, focusing on practical implementation rather than lengthy background.

The EDS Exercise Imperative: Stability, Proprioception, and Pacing

For individuals with EDS, exercise isn’t just about fitness; it’s about building a stable foundation to mitigate joint instability, enhance body awareness (proprioception), and manage fatigue. The goal is to strengthen the muscles that support joints, not to increase flexibility – a common misconception for hypermobile individuals.

Prioritizing Joint Stability Through Targeted Strengthening

The cornerstone of EDS-friendly exercise is strengthening the muscles that actively stabilize your joints. Ligaments, which normally provide passive stability, are often lax in EDS, making strong muscles even more critical.

  • Focus on Isometric and Controlled Movements: Instead of dynamic, wide-range motions, emphasize exercises where muscles contract without significant joint movement (isometric) or through a very controlled, limited range.
    • Example: Wall Sits for Knee Stability. Stand with your back against a wall, feet shoulder-width apart. Slowly slide down until your knees are bent at a 45-degree angle (or less, if painful). Hold for 10-20 seconds, focusing on engaging your quadriceps and glutes. Ensure your knees stay aligned over your ankles and don’t collapse inward. Gradually increase hold time as tolerated.

    • Example: Plank for Core Stability. Start on your forearms and knees, then progress to toes if comfortable. Keep your body in a straight line from head to heels, engaging your abdominal muscles. Avoid letting your hips sag or pike up. Hold for short durations (e.g., 10-15 seconds) and repeat, prioritizing perfect form over duration. If a full plank is too challenging, perform it against a wall or with hands on an elevated surface.

    • Example: Scapular Squeezes for Shoulder Stability. Sit or stand tall. Gently squeeze your shoulder blades together and down, as if trying to hold a pencil between them. Hold for 3-5 seconds and release. This strengthens the muscles that stabilize the shoulder girdle, reducing the risk of subluxations. Perform 10-15 repetitions.

  • Utilize Resistance Bands and Light Weights: These tools offer adjustable resistance, allowing for gradual progression without overloading fragile joints.

    • Example: Banded Clamshells for Hip Stability. Lie on your side with knees bent and a resistance band around your thighs, just above the knees. Keeping your feet together, open your top knee upward like a clamshell, engaging your gluteal muscles. Control the movement as you slowly lower your knee back down. Perform 10-15 repetitions per side.

    • Example: Bicep Curls with Light Dumbbells: Sit or stand with a light dumbbell (1-2 lbs, or even just body weight initially) in each hand, palms facing forward. Slowly bend your elbows, bringing the weights towards your shoulders, focusing on controlled movement. Lower slowly. This strengthens arm muscles without putting excessive strain on elbow or shoulder joints.

  • Embrace Water-Based Exercise (Aquatic Therapy): The buoyancy of water reduces the impact on joints while providing gentle, multi-directional resistance.

    • Example: Water Walking. Walk laps in chest-deep water, focusing on a heel-to-toe stride. The water resistance will challenge your muscles without the jarring impact of land-based walking.

    • Example: Leg Swings in Water. Hold onto the side of the pool for support. Gently swing one leg forward and backward, then side to side, controlling the movement against the water’s resistance. This improves hip mobility and strength without stressing the joint.

    • Example: Gentle Water Aerobics. Participate in a low-impact water aerobics class, ensuring modifications are available and you’re not pushing into painful ranges of motion.

Cultivating Proprioception: Knowing Where Your Body Is

Proprioception, your body’s sense of its position in space, is often impaired in EDS due to connective tissue laxity. Enhancing it helps your brain better coordinate muscle activity to protect joints.

  • Balance Exercises:
    • Example: Single-Leg Stance. Stand near a sturdy surface for support if needed. Lift one foot slightly off the ground, aiming to hold the position for 10-30 seconds. Focus on feeling the small muscle adjustments in your standing leg. Progress by closing your eyes (only if safe and stable) or standing on an unstable surface like a firm pillow.

    • Example: Heel-to-Toe Walk. Walk in a straight line, placing the heel of your front foot directly in front of the toes of your back foot. This challenges balance and coordination, improving proprioceptive feedback.

  • Mindful Movement: Pay close attention to how your body moves during daily activities and exercises.

    • Example: Slow, Deliberate Movements. When reaching for an object, consciously engage your shoulder and arm muscles to control the movement, rather than letting your arm “hang” at the end range. This helps retrain muscle activation patterns.

    • Example: Body Scans during Rest. Lie or sit comfortably and mentally scan your body, noticing the position of each joint and how different parts feel. This increases internal body awareness.

The Art of Pacing: Avoiding the “Boom and Bust” Cycle

Overexertion is a major pitfall for those with EDS, leading to prolonged pain, fatigue, and injury. Pacing is about distributing your energy and activity levels wisely.

  • Start Low, Go Slow, Progress Gradually: This is the golden rule for EDS exercise. Begin with a very small amount of activity, even if it feels “too easy,” and slowly increase duration, intensity, or resistance.
    • Example: 5-Minute Walks. If you’re new to exercise or recovering from a flare, start with just a 5-minute gentle walk, 2-3 times a day. If that feels manageable for a few days, increase to 7 minutes, then 10, and so on. Don’t jump from 5 to 30 minutes.

    • Example: One Set of Exercises. When introducing a new strength exercise, do only one set of 5-8 repetitions for the first few sessions, even if you feel you could do more. Assess how your body responds over the next 24-48 hours before adding a second set.

  • Listen to Your Body (The “Talk Test” and Pain Scale): Discomfort is normal, but pain that increases during or after exercise, or pain that lasts for more than a few hours, is a sign to back off.

    • Example: The “Talk Test” for Cardio. During aerobic activity like walking, you should be able to hold a conversation comfortably. If you’re gasping for breath, you’re working too hard.

    • Example: Pain Scale Rule. Aim for a pain level of 0-3 out of 10 during and immediately after exercise. If your pain consistently goes above 3, you’re likely doing too much or using improper form. Modify or stop the activity.

  • Schedule Rest Days: Rest is not a luxury; it’s a critical part of recovery and adaptation. Integrate regular rest days into your weekly schedule, and don’t hesitate to take an extra rest day if your body needs it.

    • Example: Alternate Activity Types. Instead of doing strength training every day, alternate it with gentle cardio or active recovery like stretching. For instance, Monday: strength, Tuesday: gentle walk, Wednesday: rest, Thursday: strength, Friday: aquatic therapy, Saturday: rest, Sunday: light stretching.
  • Track Your Activity and Symptoms: A simple exercise log can help you identify patterns, understand your limits, and celebrate progress.
    • Example: Exercise Journal. Note the type of exercise, duration/sets/reps, perceived exertion, and any pain or fatigue levels before, during, and after. Review this weekly to adjust your routine. For instance, “Monday: Wall Sits (3x10s), Plank (3x10s). Felt good during, slight knee ache later, gone by morning.” This helps you learn your body’s unique thresholds.

Key Exercise Modalities for EDS

While individual needs vary, certain exercise types generally prove beneficial for those with EDS.

Strength Training: The Foundation of Stability

Strength training is paramount for EDS. It helps build the muscular “bracing” that compensates for lax ligaments.

  • Controlled, Low-Load Movements: Avoid heavy lifting, explosive movements, or anything that puts excessive torque on joints. Focus on controlled, slow movements through a limited range of motion.
    • Actionable: Bodyweight Exercises with Modifications.
      • Mini Squats: Instead of deep squats, aim for a small bend in the knees (e.g., 30 degrees) while keeping knees aligned over ankles. Use a chair for support if needed, or practice sitting down and standing up slowly.

      • Wall Push-ups: Stand facing a wall, place hands slightly wider than shoulder-width on the wall. Lean in, bending elbows, then push back to starting position. This is a low-impact way to strengthen chest and triceps.

      • Glute Bridges: Lie on your back with knees bent, feet flat on the floor. Lift your hips off the floor, squeezing your glutes, until your body forms a straight line from shoulders to knees. Lower slowly. This strengthens glutes and hamstrings, crucial for hip and lower back stability.

  • Core Strengthening: A strong core stabilizes the spine and pelvis, providing a stable base for all other movements.

    • Actionable: Deep Core Engagement.
      • Pelvic Tilts: Lie on your back, knees bent. Gently flatten your lower back into the floor by tilting your pelvis, engaging your lower abdominal muscles. Hold for a few seconds, then release. Focus on slow, controlled movement.

      • Bird-Dog (Modified): Start on hands and knees. Instead of extending opposite arm and leg fully, focus on extending just one arm or one leg at a time, keeping your core stable and back flat. Gradually progress to extending opposite limbs, ensuring no spinal movement or arching.

Low-Impact Aerobic Exercise: Cardiovascular Health Without Joint Strain

Cardiovascular fitness is vital for overall health and managing fatigue in EDS. Choose activities that minimize impact and provide consistent, moderate intensity.

  • Actionable: Smart Cardio Choices.
    • Swimming/Water Aerobics: As mentioned, water provides ideal buoyancy and resistance. Focus on smooth, controlled strokes. Avoid hyper-extending limbs.

    • Stationary Biking/Recumbent Biking: These offer controlled movement and support. Adjust the seat and handlebars to ensure proper alignment and avoid knee hyperextension. Start with short durations (10-15 minutes) at a low resistance.

    • Elliptical Trainer: Provides a low-impact, full-body workout. Maintain good posture and avoid locking out knees or elbows.

    • Brisk Walking (on flat, even surfaces): While weight-bearing, walking is generally low-impact. Wear supportive shoes. Consider walking poles for added stability and upper body engagement. Avoid uneven terrain or long distances initially.

Gentle Movement Practices: Enhancing Body Awareness and Calm

Practices like modified yoga and Pilates can be highly beneficial for EDS, provided they are adapted to prevent overstretching and focus on stability and core engagement.

  • Actionable: Modified Yoga and Pilates.
    • Gentle Yoga (Chair Yoga or Restorative Yoga): Focus on poses that emphasize grounding, stability, and mindful breathing rather than deep stretches. Use props like blocks, blankets, and chairs extensively. Avoid poses that put joints into extreme ranges of motion or involve prolonged passive stretching. A qualified instructor knowledgeable about hypermobility is essential.

    • Clinical Pilates: Emphasizes core control, precise movements, and postural alignment. Many Pilates exercises can be modified to support unstable joints. Seek an instructor with experience working with hypermobility or EDS.

    • Tai Chi: This low-impact martial art involves slow, flowing movements and deep breathing. It’s excellent for balance, proprioception, and mindfulness, without stressing joints.

The EDS Exercise Toolkit: Essential Considerations

Beyond specific exercises, a smart approach to movement with EDS involves several practical tools and strategies.

Proper Warm-up and Cool-down

Often overlooked, these phases are crucial for preparing your body and aiding recovery.

  • Actionable: EDS-Specific Warm-up.
    • Gentle Mobilizations: Before activity, perform small, controlled movements to warm up synovial fluid and gently activate muscles. For example, gentle shoulder rolls, ankle circles, or knee bends within a pain-free range.

    • Dynamic Stretching (Very Limited): Focus on gentle movements that take joints through a controlled, comfortable range of motion, rather than static stretches. Think arm circles or leg swings that don’t push into end-range hypermobility.

    • Muscle Activation: Lightly activate the muscles you intend to work. For example, a few gentle glute squeezes before walking.

  • Actionable: EDS-Specific Cool-down.

    • Gradual Reduction in Intensity: Slowly decrease the intensity of your activity over 5-10 minutes.

    • Light, Controlled Movement: Continue with very gentle, controlled movements rather than static stretching, which can overstretch already lax tissues. Focus on maintaining good posture and engaging core muscles during these movements.

    • Self-Massage/Foam Rolling (Gentle): Can help release muscle tension. Use light pressure and avoid direct contact with bony prominences or hypermobile joints.

Joint Protection Strategies

Preventing injury is paramount.

  • Actionable: Everyday Joint Awareness.
    • Avoid Hyperextension: Consciously “unlock” your joints. If your elbows or knees tend to hyperextend, maintain a slight bend (a “soft” elbow or knee) during all movements and standing.

    • Use Larger Joints: When possible, distribute loads across larger, more stable joints. For example, carrying groceries in a backpack rather than a single bag to spare wrist and finger joints.

    • Bracing/Taping (Consult a Professional): If a joint is particularly unstable, a physical therapist or orthotist can recommend appropriate braces or taping techniques to provide external support during activity. Do not self-brace without professional guidance, as improper bracing can lead to muscle atrophy or shift stress to other joints.

    • Ergonomics: Optimize your workspace and daily environment to reduce strain. Use ergonomic chairs, adjust computer screens, and take frequent breaks to change positions.

Hydration and Nutrition

Support your body’s recovery and connective tissue health.

  • Actionable: Optimized Hydration.
    • Consistent Water Intake: Sip water throughout the day, even when not exercising. Aim for pale yellow urine.

    • Electrolyte Balance: Due to dysautonomia (common in EDS), many individuals benefit from increased salt and electrolyte intake, especially before and after exercise. Consider adding electrolyte supplements or consuming electrolyte-rich foods (e.g., coconut water, broths). Always discuss this with your doctor, especially if you have other health conditions.

  • Actionable: Connective Tissue Supportive Nutrition.

    • Protein for Repair: Ensure adequate protein intake to support muscle repair and growth. Lean meats, fish, eggs, legumes, and plant-based protein sources are good choices.

    • Vitamin C: Crucial for collagen synthesis. Include plenty of colorful fruits and vegetables (e.g., bell peppers, citrus, berries, broccoli).

    • Anti-Inflammatory Foods: Focus on a diet rich in whole, unprocessed foods to reduce systemic inflammation. Include omega-3 fatty acids (fatty fish, flaxseeds, chia seeds), turmeric, ginger, and plenty of leafy greens.

    • Bone Health Nutrients: Calcium, Vitamin D, and Magnesium are important for bone density, which can be a concern in EDS. Dairy, fortified plant milks, leafy greens, nuts, and seeds are good sources.

Post-Exercise Recovery

Active recovery and listening to your body after a workout are as important as the workout itself.

  • Actionable: Smart Recovery Techniques.
    • Active Recovery: Instead of immediately stopping, engage in very light activity like a slow walk or gentle stretching for 5-10 minutes to help flush out metabolic byproducts.

    • Heat or Cold Therapy: Apply heat to sore muscles to promote blood flow and relaxation, or cold to reduce inflammation in specific joints. Experiment to see what works best for you.

    • Adequate Sleep: Prioritize 7-9 hours of quality sleep. This is when your body repairs and rebuilds.

    • Don’t Push Through Excessive Soreness: While some muscle soreness (DOMS) is normal, debilitating or prolonged soreness (lasting more than 1-2 days) indicates you’ve done too much. Adjust your next workout accordingly by reducing intensity or duration.

Red Flags and When to Stop

Knowing when to modify or stop is crucial to prevent further injury.

  • Actionable: Recognizing Warning Signs.
    • Sharp, Sudden Pain: Immediately stop the activity. This could indicate a subluxation, dislocation, or other acute injury.

    • Joint Instability/Clicking/Popping (Beyond Normal): While some joint sounds are common in EDS, new or painful clicking/popping, or a sensation of a joint “giving way,” means you should stop.

    • Increased Swelling or Redness: These are signs of inflammation. Rest the affected area and consider ice.

    • Persistent Pain (24+ hours): If pain from exercise lasts longer than a day, you’ve likely overdone it. Reduce the intensity or duration of your next session, or take an extra rest day.

    • Excessive Fatigue: If exercise consistently leaves you completely drained for hours or days, you’re pushing too hard. This is particularly relevant given the high rates of chronic fatigue in EDS.

    • Autonomic Symptoms: Watch for lightheadedness, dizziness, extreme changes in heart rate, or nausea, which can be signs of dysautonomia exacerbated by exertion. Modify or stop immediately and rest.

Conclusion

Exercising with Ehlers-Danlos Syndrome is not about overcoming your body’s limitations, but intelligently working with them. By relentlessly prioritizing joint stability, consciously improving proprioception, and mastering the art of pacing, you can build strength, improve function, and enhance your quality of life. This isn’t a quick fix; it’s a lifelong journey of mindful movement, consistent self-assessment, and gentle, yet persistent, progression. Your body is unique, and your exercise plan should reflect that, evolving as you learn more about your personal thresholds and responses.