For Physical Therapist Clinicians

The resources here are intended for use by qualified and licensed healthcare providers, who take full responsibility for how they use these resources. Nothing here should replace care from a qualified medical provider.

Clinical Considerations: A Guide for Physical Therapists

Treating patients with Ehlers-Danlos syndrome (EDS) requires rethinking many standard physical therapy assumptions. These patients are not simply deconditioned or fearful—they present with altered connective tissue mechanics, impaired proprioception, and nervous system adaptations shaped by repeated injury and instability [Castori 2012; Malfait 2017].

Effective care depends as much on how therapy is delivered as what exercises are prescribed.

Psychosocial Factors Strongly Influence Outcomes

Most patients with EDS enter physical therapy with a complex psychosocial background that directly affects participation and progress.

Common features include:

  • Kinesiophobia grounded in lived injury experience rather than avoidance behavior [Castori 2012]

  • Prior harm in PT, often due to overly aggressive strengthening or stretching [Celletti 2015]

  • Medical invalidation or gaslighting, particularly when imaging is normal despite severe symptoms [Castori 2017]

  • Hopelessness or catastrophizing (“this will never get better”) [Clauw 2014]

  • Difficulty identifying triggers, especially with delayed symptom flares [Engelbert 2017]

  • High comorbidity burden, including dysautonomia/POTS, GI dysfunction, migraines, pelvic floor dysfunction, and MCAS [Eccles 2012; Tinkle 2017]

These patients are often labeled as “fragile,” when in reality they are highly adaptive, skilled compensators operating in a system with poor passive stability.

Validation, predictability, and collaborative pacing are therapeutic interventions.

Session Flow Must Account for Autonomic Dysfunction

Autonomic symptoms are common and clinically relevant in EDS [Eccles 2012; Mathias 2021].

Clinical implications:

  • Avoid rapid position changes

  • Consider starting sessions supine or seated

  • Build rest breaks into sessions proactively

  • Monitor vitals as appropriate (HR, BP, symptom response)

  • Recognize that orthostatic stress can impair motor learning

Symptom exacerbation related to autonomic load should not be misinterpreted as lack of effort or poor tolerance.

Continuous Feedback Is Essential

Patients with EDS often cannot accurately assess symptom response in real time due to:

  • impaired proprioception

  • delayed-onset pain

  • nervous system sensitization [Rombaut 2015; Woolf 2011]

Best practices include:

  • Requesting ongoing feedback during sessions

  • Tracking later-day and next-day responses

  • Normalizing exercise modification or discontinuation

  • Avoiding language that frames adjustment as “regression”

Delayed flares are data—not noncompliance.

FORM IS THE PRIMARY DOSING VARIABLE

Form and joint control matter more than intensity, volume, or repetition count.

Before strengthening:

  • Assess for excessive global holding and guarding

  • Teach downregulation of resting muscle tone

  • Reduce reliance on secondary stabilizers

Strength layered onto chronic guarding increases pain, fatigue, and inefficiency [Celletti 2015; Engelbert 2017].

Strengthening Principles Specific to EDS

Core Comes First—but With Redefined Goals

Core training should prioritize:

  • alignment and midline control

  • subtle activation rather than maximal effort

  • integration with breathing

  • transfer to functional movement over time

Traditional core paradigms (planks, crunches, long-lever challenges) are often poorly tolerated early [Celletti 2015].

Favor Isometrics and Closed-Chain Work

These approaches:

  • minimize joint shear

  • enhance proprioceptive input

  • support mid-range control

  • reduce reliance on end-range stability [Panagiotopoulou 2016; Rombaut 2015]

Progressions should remain submaximal for longer than in non-hypermobile populations.

Mid-Range, Low-Impact, Submaximal Loading

Key considerations:

  • Avoid end-range loading

  • Avoid high-impact or ballistic tasks

  • Delay heavy push/pull/lift

  • Accept that sessions may not be pain-free, but must avoid post-exertional symptom flares that last into the next day

Hyperalgesic nervous systems require conservative loading strategies [Clauw 2014; Woolf 2011].

Proprioception Is a Core Impairment

Proprioceptive deficits are well-documented in EDS and hypermobility-related disorders [Rombaut 2015; Scheper 2016].

Assessment should include:

  • ability to find and return to neutral

  • control with reduced visual input

  • movement quality under low load

  • joint drift, locking, or excessive co-contraction

Do not assume proprioception will normalize as a byproduct of strengthening—treat it explicitly [Engelbert 2017].

Address Muscle Tone in Two Distinct Domains

EDS patients require intervention in two related but separate areas:

1. Static Resting Muscle Tone

Goals:

  • reduce baseline guarding

  • decrease overactivity of secondary stabilizers

  • improve comfort and fatigue levels

2. Dynamic Muscle Tone and Endurance

Goals:

  • support functional joint stability

  • improve task-specific control

  • increase tolerance for daily activities

Progressing dynamic strength without addressing static overactivity increases symptom burden [Celletti 2015; Castori 2017].

Redefining Progress in patients with EDS

Progress may present as:

  • fewer or shorter flares

  • faster recovery after activity

  • reduced guarding

  • improved confidence in movement

  • improved tolerance rather than peak output

  • Improvement in tolerance for ADLs

Linear progression is uncommon. Sustainable progress is the clinical goal [Engelbert 2017].

Clinical Bottom Line

Patients with EDS are not fragile—they are biomechanically and neurologically distinct.

Effective physical therapy prioritizes:

  • control over range

  • precision over intensity

  • consistency over volume

  • collaboration over compliance

When therapy aligns with tissue behavior and nervous system needs, outcomes improve and trust is restored.