Coordination, Balance, and Proprioception in hEDS

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Coordination, balance, and proprioception are frequently impaired in individuals with hypermobile Ehlers-Danlos syndrome (hEDS). These deficits can impact both gross motor function (large movements like walking or climbing stairs) and fine motor function (small precise movements like writing or buttoning), often beginning in childhood and potentially worsening over time. Symptoms are not only physical but can also affect confidence and participation in everyday life.

Common Symptoms

People with hEDS often report

• Clumsiness

• Frequent tripping or falling

• Difficulty with fine motor tasks (e.g., handwriting, using utensils, buttons)

• Unsteady gait and trouble walking in the dark or on uneven surfaces

• Poor postural control, especially when standing still

• Fear of falling and reduced confidence in movement, which may further limit activity and participation

Underlying Causes

The causes of these impairments are multifactorial and involve both mechanical and neurological components

Connective Tissue Laxity and Joint Instability

• Ligaments and tendons normally contain proprioceptive receptors that help the brain sense joint position.

• In hEDS, these structures are too lax or unstable, leading to disrupted proprioceptive input.

• Result: The brain receives inaccurate or delayed information about body position and movement.

Altered Somatosensory Processing

• Studies suggest impaired central integration of proprioceptive, vestibular, and visual signals in hEDS.

• This altered processing results in poor multisensory integration and contributes to balance instability and uncoordinated movement.

Fascial Abnormalities and Myofibroblast Dysfunction

• Emerging research suggests that fascial integrity and tension regulation are disrupted in hEDS.

• Dysfunction in myofibroblasts, the cells responsible for tissue tone and signaling, may play a role in proprioceptive deficits.

Muscle Weakness and Deconditioning

• Due to pain, fatigue, and activity avoidance, muscles that stabilize joints often become weak over time.

• Deconditioning exacerbates balance and coordination issues.

Dysautonomia (e.g., POTS) and Vestibular Involvement

• Common in hEDS, postural orthostatic tachycardia syndrome (POTS) and other autonomic disorders can cause lightheadedness and near-syncope, which impair postural control.

• Some individuals also experience vestibular dysfunction (problems with balance or dizziness), which may arise from superior semicircular canal dehiscence (a small hole or thinning in one of the balance canals of the inner ear) or altered inner ear mechanics (changes in how the inner ear senses motion and position).

Prevalence and Progression

• Approximately 60% of people with hEDS report difficulties with coordination, balance, and proprioception.

• These problems often begin in childhood and may worsen with

  • Recurrent joint injuries

  • Chronic pain

  • Reduced physical activity

  • Age-related deconditioning

• Empirical studies have documented

  • Increased postural sway (greater side-to-side or back-and-forth body movement when trying to stand still)

  • Reduced gait velocity (slower walking speed)

• Impaired balance, particularly when visual input is removed

Treatment and Management

Individualized Physical Therapy

• Central to treatment

• Focuses on

  • Proprioceptive training

  • Balance exercises (e.g., foam pads, single-leg stands)

  • Joint stabilization techniques

• Should progress slowly and adapt to pain, fatigue, and joint instability

Somatosensory Orthoses

• Use of compression garments, orthotic insoles, and bracing can enhance joint feedback and stability.

• Studies have shown that these tools can improve postural stability, especially under challenging sensory conditions.

Vestibular Rehabilitation Therapy (VRT)

• Beneficial for those with dizziness, balance loss with head motion, or vestibular dysfunction

• Includes gaze stabilization, habituation, and postural training

Occupational Therapy

• Addresses fine motor skills and helps adapt tasks for improved independence

Management of Dysautonomia

• Includes increased fluid and salt intake, compression garments, medications (e.g., fludrocortisone, beta-blockers), and pacing strategies to reduce orthostatic symptoms

Effectiveness of Treatment

• Systematic reviews show that physiotherapy can improve proprioception, reduce pain, and enhance quality of life, though effects may be modest and variable.

• No one-size-fits-all approach—treatment success often depends on

  • Early intervention

  • Regular, long-term therapy

  • Multidisciplinary support

• Despite interventions, some deficits may persist or progress with age and increasing disease burden.

Summary Table: Coordination and Balance Issues in hEDS

Summary

Individuals with hypermobile Ehlers-Danlos syndrome (hEDS) commonly experience challenges with coordination, balance, and proprioception—an internal sense of body position. These difficulties often begin in childhood and can worsen with age, leading to clumsiness, frequent falls, difficulty with fine motor tasks, and reduced confidence in movement. Underlying causes include joint instability, impaired sensory integration, fascial and muscle dysfunction, and autonomic issues such as POTS. About 60% of people with hEDS report these symptoms. Treatment focuses on physical and occupational therapy, proprioceptive and balance training, use of orthotic supports, and management of related conditions. While no cure exists, individualized and multidisciplinary interventions can improve function and quality of life.