Physical Therapy for EDS – Ehlers-Danlos Syndrome

The Ehlers-Danlos Syndromes (EDS) are a complex group of connective tissue disorders that affect the body in various ways, depending on the specific type. These syndromes are caused by genetic mutations that impact the connective tissues, which play a vital role in supporting, protecting, and maintaining the structure of the body’s organs, skin, joints, and blood vessels. With 13 recognized types of EDS, each presenting unique challenges and symptoms, understanding this condition is key to proper diagnosis and management. PHYT Collective in Northeast DC offers specialized physical therapy services to help individuals with EDS manage symptoms and improve quality of life.

The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders.

Connective tissues help to form, support, and protect the body’s many systems.

Currently there are 13 types of EDS:

• Arthrochalasia EDS (aEDS)
• Brittle Cornea Syndrome (BCS)
• Cardiac-Valvular EDS (cvEDS)
• Classical EDS (cEDS)
• Classical-Like EDS (clEDS)
• Dermatosparaxis EDS (dEDS)
• Hypermobile EDS (hEDS)
• Kyphoscoliotic EDS (kEDS)
• Musculocontractural EDS (mcEDS)
• Myopathic EDS (mEDS)
• Periodontal EDS (pEDS)
• Spondylodysplastic EDS (spEDS)
• Vascular EDS (vEDS)

Each type presents differently, but there are hallmarks to the disease including joint hypermobility and instability, skin changes, muscle weakness and tension, and decreased proprioception. hEDS is the most common type of EDS, and currently the only type that cannot be diagnosed via genetic testing. 

At present there is no cure for EDS, therefore education on symptom management and activity modification remain important to maintaining a full life with the disorder.

Physical therapy can be a useful tool in management of issues associated with the condition. An EDS knowledgeable PT can aide with:

• Joint stabilization through exercise and passive stability such as bracing and compression garments.
• Utilization of manual techniques including trigger point dry needling to manage chronic pain and improve joint function.
• Train patients on proprioceptive exercises with balance and coordination techniques to maintain neutral positioning during movements involved in activities of daily living.
• Educate individuals on lifestyle modifications including ergonomic training and adaptive techniques to improve interaction with their daily environment and decrease fatigue.
  

More articles from our physical therapy blog:

Exploring Manual Physical Therapy and Functional Dry Needling in Washington DC
Corrective Exercise & Neuromuscular Re-Education in Washington, DC
Aging & Resiliency Training Through Physical Therapy

Exercise should be gradual and tailored to individual capabilities to avoid exacerbating symptoms or causing injury. Exercise specifically can be highly beneficial for individuals with EDS for several important reasons:

Improving Muscle Strength and Joint Stability:

• Regular exercise, particularly strength training, helps strengthen the muscles around joints. Stronger muscles can provide better support to the joints, reducing the risk of subluxations and dislocations.

Enhancing Joint Proprioception:

• Proprioception refers to the body’s ability to sense the position and movement of joints. EDS patients often have reduced proprioception, leading to poor joint control. Exercise programs designed by physical therapists can include proprioception training exercises to improve joint awareness and stability.

Managing Chronic Pain:

• Chronic pain is a common symptom in EDS, often due to joint instability and musculoskeletal issues. Exercise, when tailored appropriately, can help manage pain by strengthening muscles, improving posture, and promoting better joint alignment.

Promoting Mental Well-being:

• Living with a chronic condition like EDS can impact mental health. Exercise has been shown to boost mood, reduce anxiety and depression, and improve overall well-being. It can provide a sense of accomplishment and empowerment, especially when progress is observed over time.

Improving Quality of Life:

• Engaging in appropriate exercise can enhance daily functioning and independence. It allows individuals with EDS to participate more fully in activities they enjoy and maintain a higher quality of life.
  

Due to the complexities of EDS care it is important to find an EDS knowledgeable provider.  A stepwise approach to manual interventions and exercise is often needed, requiring modifications based on feedback and patient response.

At the PHYT Collective we are lucky to have several EDS knowledgeable providers and provide 1 on 1 patient care for 60 minute appointments.

This specialized care allows the provider the time necessary to provide a personalized program to address the complex and varying needs of EDS patients.