Exercise and hEDS
Exercise is a cornerstone of management for people with hypermobile Ehlers-Danlos syndrome (hEDS). Despite the increased risk of injury due to joint hypermobility and tissue fragility, movement plays a critical role in improving muscle strength, proprioception, joint stability, and overall function. When tailored and supervised appropriately, exercise has been shown to reduce pain, improve balance, decrease fatigue, and enhance quality of life in individuals with hEDS.
Injury Risk in hEDS
People with hEDS are more prone to musculoskeletal injuries due to the underlying connective tissue disorder. Common risks include
Joint subluxations and dislocations during movement or exercise
Sprains, strains, and soft tissue injuries from fragile ligaments and tendons
Poor proprioception, leading to misjudged movement and joint instability
Chronic pain and fatigue, which complicate exercise participation and recovery
Exercise intolerance or dysautonomia, especially in those with coexisting POTS
These challenges make it essential that exercise be cautious, structured, and adapted to the individual.
Why Exercise Matters
Despite the risks, exercise remains a fundamental component of managing hEDS. According to GeneReviews and other expert guidelines
Exercise improves core and extremity strength, joint stability, and proprioception.
Structured movement reduces kinesiophobia (fear of movement), enhances balance and function, and may decrease fatigue and pain over time.
Therapeutic exercise has been shown to produce sustained improvements in quality of life when practiced under proper supervision.
Patient education, psychological support, and building trust with clinicians or physical therapists help improve adherence and reduce injury anxiety.
The Role of Stretching
The role of stretching in exercise programs for people with hEDS is limited and must be approached with caution.
Empirically, most studies and systematic reviews of physical therapy for hEDS focus on
Strengthening
Motor control and proprioceptive training
Functional stability
There is little direct evidence supporting stretching as a primary intervention in this population.
Theoretical concerns arise from the fundamental nature of hEDS
Individuals already have excessive joint range of motion.
Stretching—especially aggressive or end-range stretching—may exacerbate joint instability, increasing the risk of subluxation, dislocation, or soft tissue injury.
When included, stretching should be
Gentle and highly individualized
Focused on reducing protective muscle tension—not improving flexibility
Carefully avoiding end-range positions that could stress hypermobile joints
Always used in combination with stabilization and strengthening
Patient education and close guidance from physiotherapists familiar with hEDS are essential to ensure safety and prevent harm.
In some cases, mild stretching can offer benefit in addressing secondary muscular tightness or compensatory postural imbalances, but it should never be used as a general flexibility strategy in this population.
The Role of Weight-Bearing Exercise
The role of weight-bearing and resistance exercise in hEDS is well-supported by both research and clinical experience.
Empirical data show that properly designed programs can
Improve muscle strength and tone
Enhance joint stability and proprioceptive feedback
Reduce pain and increase functional capacity
Improve quality of life over time
Theoretical benefits include
Counteracting deconditioning and physical inactivity
Supporting bone density, which may be compromised in some individuals with hEDS
Enhancing neuromuscular coordination, reducing falls and injury
However, weight-bearing exercises must be
Tailored and progressive, with a strong emphasis on control and alignment
Performed under supervision when possible, especially during initial phases
Introduced gradually to minimize the risk of overload or joint trauma
High-impact or unsupervised activities are generally discouraged, as they may provoke injury due to joint instability or tissue fragility. Emphasis should be placed on low-load, high-control movements, such as closed-chain exercises that activate stabilizing muscles and improve movement precision.
Recommended Exercise Types
Low-impact, individualized, and supervised programs are generally safest and most effective. These may include
Physical therapy-guided strengthening programs
Closed-chain exercises (e.g., bridges, wall sits) that stabilize joints
Core stabilization and motor control training to support posture and reduce stress on joints
Swimming or aquatic therapy, which reduces joint loading
Pilates and modified yoga that emphasize alignment, control, and neutral joint positions
Balance and proprioceptive work (e.g., wobble boards, soft surfaces)
Stationary cycling or recumbent bikes for low-impact cardiovascular conditioning
These activities should focus on controlled motion, not flexibility or intensity.
Exercises to Avoid or Modify
Certain activities may increase risk for injury or symptom flare-ups in people with hEDS
High-impact or contact sports (e.g., running on hard surfaces, tackle football, gymnastics)
Stretching routines that promote hyperextension (movement beyond the joint’s normal range of motion)
Heavy resistance training, particularly without supervision or proper joint alignment
Rapid, repetitive movements that can overstrain joints or soft tissues
Yoga and dance that involve deep ranges of motion unless significantly modified
While most sports and activities are not strictly off-limits, they often need careful adaptation. Clinicians may recommend avoiding certain sports altogether depending on the individual’s history of injury or joint instability.
Safety Considerations
To minimize risk and maximize benefit, exercise programs should include
Gradual progression in intensity and duration
Avoidance of end-range joint positions that may provoke instability
Attention to form and joint alignment at all times
Warm-ups and cool-downs to ease into and out of movement
Use of bracing or taping for joints prone to instability or injury
Close monitoring for dysautonomia symptoms such as dizziness or fatigue
Regular communication with a knowledgeable clinician or physical therapist
Programs should be adjusted in real time based on feedback from the patient, and rest should be prioritized when symptoms worsen.
The Role of Supervised Rehabilitation
Supervision by physical therapists or rehabilitation professionals familiar with hEDS is strongly recommended. Benefits include
Safe and individualized program design
Guidance to prevent injury and correct movement patterns
Support for overcoming fear of injury or movement
Increased confidence and long-term participation in exercise
These clinicians also play a critical role in patient education, pacing strategies, and long-term rehabilitation planning.
Limitations in the Research
While clinical experience supports the benefits of exercise for hEDS, there is limited research on the optimal type, frequency, and intensity of exercise for this population. There is also a recognized lack of robust, long-term randomized controlled trials specifically addressing stretching and weight-bearing exercise. More studies are needed to establish evidence-based guidelines and help clinicians make personalized recommendations. Until then, expert supervision and individualized planning remain essential.
Summary
Exercise is essential for people with hypermobile Ehlers-Danlos syndrome but must be approached with care. Although the risk of injury is higher due to joint instability and tissue fragility, properly tailored and supervised movement improves strength, proprioception, pain, fatigue, balance, and confidence. Stretching should be used sparingly, with caution, and only under expert supervision, while weight-bearing exercise forms the foundation of effective long-term management. Low-impact activities, motor control training, and physical therapy programs offer the safest and most effective options. With patient education and guidance from professionals experienced in hEDS, exercise becomes a powerful tool for long-term health and function—even in the face of a complex connective tissue disorder.
