Delayed Recovery and Healing in hEDS

Delayed recovery from injury and exertion is a common and distressing issue for people with hypermobile Ehlers-Danlos syndrome (hEDS). Even minor physical exertion or trauma—such as household chores, gentle exercise, or a small fall—can result in pain, dysfunction, and fatigue that lasts far longer than expected. This phenomenon is multifactorial, involving impaired healing, dysregulated nervous system responses, and chronic biomechanical stress.

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Why Does Recovery Take So Long in hEDS?

​Delayed healing in hEDS is not a result of deconditioning alone, but a biological and neurological issue with several overlapping causes.

Connective Tissue Fragility

• People with hEDS have abnormal collagen and extracellular matrix properties, resulting in soft tissues that are weak, overly elastic, and injury-prone.

• Minor tears or sprains do not heal efficiently and often result in scar tissue that lacks strength.

Impaired Proprioception and Motor Control

• Individuals with hEDS frequently have poor joint awareness, leading to unintentional overstretching or misalignment during movement.

• This can cause repetitive microtrauma and failures in natural protective mechanisms, exacerbating injury and pain.

Autonomic Dysfunction

• Conditions like postural orthostatic tachycardia syndrome (POTS) or orthostatic intolerance are common in hEDS.

• These contribute to impaired circulation, poor oxygen delivery, and reduced capacity to recover from exertion, especially during or after activity.

Central Sensitization

• A state where the nervous system becomes hypersensitive, amplifying pain signals.

• Even healed tissues can feel painful, and the body reacts to minor stimuli as if they were major injuries.

Pathological Fascial Remodeling and Myofibroblast Activation (Theoretical Mechanisms)

• Some researchers suggest that in hEDS, the fascia undergoes dysfunctional remodeling.

• This can lead to chronic tension, stiffness, and persistent myofascial pain.

Chronic Fatigue and Energy Dysregulation

• Many hEDS patients experience post-exertional malaise (PEM)—a crash in energy after minimal activity.

• Sleep issues, dysautonomia, and systemic inflammation further impair recovery.

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Symptoms of Delayed Recovery

• Persistent myofascial or neuropathic pain lasting days to weeks after injury

• Joint instability or subluxations following exertion

• Severe fatigue disproportionate to activity

• Exercise intolerance and worsening symptoms after physical therapy

• Functional decline, especially in mobility and endurance

• Emotional impact, including anxiety, frustration, and depression related to chronic setbacks

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Evidence-Based and Theoretical Causes

Treatment Strategies

A multidisciplinary approach is essential. According to the GeneReviews guideline (University of Washington), effective care focuses on symptom management, injury prevention, and patient education.

Physical Therapy (First-Line)

• Joint stabilization techniques

• Proprioceptive training to improve body awareness

• Gradual aerobic conditioning to minimize deconditioning and support autonomic regulation

• Avoid overloading joints; use low-resistance, high-repetition exercises

Occupational Therapy

• Ergonomic tools and activity modifications

• Energy conservation and pacing strategies

• Adaptive aids to support mobility

Medications

• Non-opioid analgesics: Acetaminophen, NSAIDs (used carefully due to GI/joint risks)

• Neuropathic pain agents: Gabapentin, pregabalin, duloxetine

• Low-dose naltrexone: Being explored for pain modulation

• Opioids typically show limited benefit and carry risks

Other Key Interventions

• Psychological support: CBT, ACT, and trauma-informed care can help manage the psychological impact of chronic injury and fatigue

• Sleep management: Addressing insomnia or non-restorative sleep

• Autonomic support: Compression garments, fluid/salt intake, medications like fludrocortisone or midodrine

• Mast cell stabilizers: If MCAS is suspected as a contributing factor

Practical Strategies for Patients

• Respect your body's limits: Don't push through pain

• Keep an activity and symptom journal to find patterns

• Break tasks into small, manageable steps with rests in between

• Use joint supports and braces when needed to prevent flares

• Warm up and cool down carefully during all activity

• Discuss your unique needs with a team that understands connective tissue disorders

Summary

Delayed recovery in hEDS is not simply "slowness to heal," but the result of a complex interplay between connective tissue pathology, autonomic dysfunction, and neurological sensitization. It contributes to significant disability and can have profound physical and emotional consequences. Effective care is preventive, proactive, and personalized—aimed at reducing injury risk, supporting healing, and empowering patients.