EDS Exercise Guide: Safe Movement Protocols for Chronic Illness

Exercise is one of the most evidence-backed interventions for EDS — but it must be done right. The wrong approach can trigger crashes and worsen symptoms. This guide covers safe exercise protocols, pacing strategies, and what the research actually recommends for EDS patients.

What the Research Says

Exercise Recommendations for Ehlers-Danlos Syndrome (EDS)

Exercise and movement are crucial for individuals with Ehlers-Danlos Syndrome (EDS) to manage symptoms, improve functional ability, and enhance overall well-being. However, due to joint instability, chronic pain, and comorbidities like POTS and fatigue, a highly individualized and cautious approach is essential. Medical clearance from relevant specialists (cardiologist, gastroenterologist, rheumatologist, GP) is always recommended before starting any exercise program.

Safe Protocols and Exercise Types: The primary focus should be on low to moderate impact aerobic activity, low-load strengthening, and proprioceptive training. Exercises that emphasize movement control and strengthening stabilizing muscles are generally suitable. It is advisable to avoid high-impact and/or contact sports. A physiotherapist experienced in EDS is ideal for developing and supervising an exercise program, as they can assess specific needs and adjust progress.

• Aerobic Exercise: Activities that elevate heart rate and improve cardiovascular fitness are beneficial. Examples include walking, using treadmills, exercise bikes, cross-trainers, and swimming. For those with POTS or significant deconditioning, recumbent cycling or walking in a pool can be excellent low-impact options. Even household activities like cleaning and gardening can contribute. The general recommendation for the general population is 150 minutes of moderate intensity per week, broken into five 30-minute sessions. For EDS patients, it's crucial to start with a small, manageable 'baseline' amount (e.g., 5-10 minutes, two to three times per week) to avoid symptom flare-ups, gradually increasing as tolerated. The 'Talk Test' can help gauge moderate intensity: you should be able to talk but not sing.

• Strength Exercise: Strengthening muscles, ligaments, tendons, and bones helps reduce injury risk and provides joint support. This can be achieved using resistance bands, light dumbbells, or body weight. Examples include sit-to-stands from a chair or bicep curls with light objects. Pilates, particularly basic mat-work modified for a clinical population, is excellent for core strength, proprioception, and body awareness. High-level traditional Pilates exercises that place undue stress on the body should be avoided. Movements should always be controlled, focusing on engaging the correct muscles.

• Flexibility: Despite hypermobility, stiffness can occur due to pain, disuse, or global muscles overworking. Gentle stretches and 'mindful movement' can help. Yoga can be beneficial, but it's vital to work with an experienced instructor and avoid overstretching into hyperextended positions, remembering that 'just because it goes there doesn't mean you should take it there.' Regularly changing positions throughout the day also helps prevent stiffness.

• Proprioception/Balance: Proprioception, the body's ability to sense joint position and movement, is often impaired in EDS, leading to instability. Training proprioception improves stability. T'ai Chi and Chi Gung, with their slow, controlled movements, are excellent for balance and stability. Standing balance exercises (feet together, eyes closed, single-leg stands, wobble boards) can also be incorporated. When performing balance exercises, ensuring a safe environment (e.g., near a wall or with chairs for support) is paramount.

Pacing Strategies and PEM/Crash Prevention: Pacing is critical for managing energy levels and preventing Post-Exertional Malaise (PEM) or 'crashes.' This involves strategically regulating exertion and listening to the body's signals. Starting with a low baseline, gradually increasing activity, and incorporating rest periods are key. A food journal can also help identify activities that trigger symptoms. It's important to understand that exercise for EDS is not about pushing through pain but about consistent, gentle movement that builds resilience without exacerbating symptoms. If a particular exercise causes a flare-up, it should be modified or avoided. For those with POTS, replacing lost salt through electrolyte drinks or salt tablets with water after exercise is important. Avoid exercising for at least an hour after eating.

Practical Day-to-Day Tips

• Keep a food and activity journal to identify individual triggers and sensitivities for both diet and exercise.
• Prioritize hydration with isotonic fluids, especially if you have POTS, and consider liberalizing salt intake under medical guidance.
• Eat small, frequent meals throughout the day to manage gastrointestinal symptoms and maintain energy levels.
• Always start exercise with a low, manageable baseline and gradually increase intensity and duration to prevent symptom flare-ups and Post-Exertional Malaise (PEM).
• Seek guidance from healthcare professionals, particularly physiotherapists experienced in EDS, to develop an individualized exercise program and ensure proper technique.

Key Research

Collins, H. (2020). Nutritional Approaches to Treating GI Concerns in Persons with EDS. Ehlers-Danlos Society 2020 Virtual Summer Conference. Parry, J. (n.d.). Exercise and movement for adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Ehlers-Danlos Society. Buryk-Iggers, S., Mittal, N., Santa Mina, D., et al. (2022). Exercise and rehabilitation in people with Ehlers-Danlos syndrome: a systematic review. Journal of Rehabilitation Research and Development. Simmonds, J. V., Herbland, A., Hakim, A., et al. (2019). Exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers–Danlos syndrome–hypermobility type. Disability and Rehabilitation.

This article is for educational purposes and does not constitute medical advice. Always consult your healthcare team before starting a new exercise program.