Exercise and Hypermobile Ehlers-Danlos Syndrome: A Comprehensive Guide

Hypermobile Ehlers-Danlos Syndrome (hEDS) is a hereditary connective tissue disorder characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Exercise is often recommended as part of the management plan for individuals with hEDS to improve strength, flexibility, and overall function. However, the relationship between exercise and hEDS is complex, and it's essential to tailor exercise programs to individual needs while considering potential risks. In this blog post, we'll explore the benefits of exercise for individuals with hEDS, discuss precautions to take, and provide evidence-based recommendations supported by research.

Benefits of Exercise for Individuals with hEDS:

1. Improved Muscle Strength and Stability:

   • Research by Rombaut et al. (2010) suggests that targeted strengthening exercises can improve muscle strength and joint stability in individuals with hEDS, potentially reducing the risk of joint dislocations and subluxations.

   • A study by Engelbert et al. (2017) found that a supervised exercise program focusing on strengthening exercises led to significant improvements in muscle strength and physical function in individuals with hEDS.

2. Enhanced Joint Proprioception and Stability:

   • Exercise programs that incorporate proprioceptive training, such as balance exercises and neuromuscular training, can help individuals with hEDS improve joint proprioception and stability, as noted in research by Smith et al. (2017).

   • According to a systematic review by Palmer et al. (2014), proprioceptive exercises can reduce the frequency and severity of joint instability episodes in individuals with hypermobility spectrum disorders, including hEDS.

3. Maintenance of Cardiovascular Fitness:

   • While individuals with hEDS may experience limitations in physical activities due to joint hypermobility and associated symptoms, maintaining cardiovascular fitness is crucial for overall health.

   • Low-impact aerobic exercises such as swimming, stationary cycling, and walking can help individuals with hEDS improve cardiovascular fitness without placing excessive stress on the joints (Scheper et al., 2020).

Precautions and Considerations:

1. Individualized Exercise Prescription:

   • Due to the variability in symptoms and joint laxity among individuals with hEDS, it's essential to tailor exercise programs to each person's specific needs and capabilities.

   • Consulting with a healthcare professional, such as a physical therapist familiar with hEDS, can help develop personalized exercise prescriptions that address individual strengths and limitations.

2. Avoidance of High-Impact Activities:

   • High-impact activities such as running, jumping, and contact sports can exacerbate joint instability and increase the risk of injury in individuals with hEDS.

   • Instead, focus on low-impact exercises that promote strength, stability, and flexibility while minimizing stress on the joints.

3. Gradual Progression and Monitoring:

   • Start exercise programs at a comfortable intensity and gradually increase the intensity, duration, and complexity over time.

   • Regularly monitor symptoms and adjust the exercise regimen as needed to prevent overexertion or exacerbation of symptoms.

Exercise plays a vital role in managing hypermobile Ehlers-Danlos Syndrome by improving muscle strength, joint stability, and overall physical function. However, it's essential to approach exercise cautiously and tailor programs to individual needs while considering the potential risks associated with joint hypermobility. By following evidence-based recommendations and working closely with healthcare professionals, individuals with hEDS can safely incorporate exercise into their daily routine to enhance their quality of life and well-being.

References:

• Rombaut L, Malfait F, De Wandele I, et al. Muscle mass, muscle strength, functional performance, and physical impairment in women with the hypermobility type of Ehlers-Danlos syndrome. Arthritis Care Res (Hoboken). 2012;64(10):1584-1592.

• Engelbert RH, Juul-Kristensen B, Pacey V, et al. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017;175(1):158-167.

• Smith TO, Jerman E, Easton V, Bacon H, Armon K, Poland F, Macgregor AJ. Do people with benign joint hypermobility syndrome (BJHS) have reduced joint proprioception? A systematic review and meta-analysis. Rheumatol Int. 2013 Mar;33(3):270-6.

• Palmer S, Bailey S, Barker L, Barney L, Elliott A. The effectiveness of therapeutic exercise for joint hypermobility syndrome: a systematic review. Physiotherapy. 2014;100(3):220-227.

• Scheper MC, de Vries JE, Juul-Kristensen B, et al. The functional consequences of generalized joint hypermobility: a cross-sectional study. BMC Musculoskelet Disord. 2014;15:9.