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What Is Ehlers-Danlos Syndrome and How Can Physical Therapy Help?

October 13, 2022
|
In Joint pain,Physical Therapy
|
By FrankCawley

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that affect how the body produces collagen. Because collagen plays a critical role in joint stability, skin integrity, and tissue strength, people with EDS often experience joint hypermobility, chronic pain, fatigue, and frequent injuries.

At Cawley Physical Therapy & Rehabilitation, we work with individuals diagnosed with Ehlers-Danlos Syndrome across Scranton, Wilkes-Barre, Trucksville, Pittston, Kingston, Nanticoke, Mountain Top, Factoryville, and Carbondale, PA. This guide explains what EDS is, how it affects the body, and how specialized physical therapy can improve safety, function, and quality of life.

Understanding Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome refers to a group of genetic conditions that affect connective tissue, which provides structure and support throughout the body. Connective tissue is found in joints, ligaments, tendons, skin, blood vessels, and internal organs.

In people with EDS, collagen may be:

  • Too stretchy
  • Poorly organized
  • Structurally weak

This leads to tissues that lack normal stability and resilience.

Types of Ehlers-Danlos Syndrome

There are several subtypes of EDS, each with unique characteristics. Some of the most commonly diagnosed include:

Hypermobile Ehlers-Danlos Syndrome (hEDS)

  • Most common form
  • Marked joint hypermobility
  • Chronic joint and muscle pain
  • Frequent subluxations or dislocations
  • Fatigue and proprioceptive challenges

hEDS is most commonly treated with physical therapy.

Classical Ehlers-Danlos Syndrome

  • Skin hyperextensibility
  • Fragile or easily bruised skin
  • Joint hypermobility

Vascular Ehlers-Danlos Syndrome

  • Fragile blood vessels
  • Risk of organ rupture
  • Requires specialized medical management

Physical therapy is used cautiously and under medical guidance.

Common Symptoms of Ehlers-Danlos Syndrome

Symptoms vary widely, even among people with the same subtype. Common symptoms include:

  • Joint hypermobility
  • Chronic joint or muscle pain
  • Frequent sprains or dislocations
  • Joint instability
  • Poor balance or coordination
  • Fatigue
  • Soft or stretchy skin
  • Delayed injury recovery

Many people with EDS report years of unexplained pain before diagnosis.

Why Ehlers-Danlos Syndrome Causes Pain and Injury

EDS affects multiple systems at once.

Joint Instability

Ligaments and joint capsules are less able to stabilize joints, leading to excessive movement beyond normal limits.

Muscle Overcompensation

Muscles often work overtime to stabilize joints, resulting in fatigue, tension, and pain.

Impaired Proprioception

Proprioception—the body’s ability to sense joint position—is often reduced, increasing injury risk.

Slower Tissue Healing

Connective tissue fragility can prolong recovery from sprains or strains.

Why Physical Therapy Is Essential for EDS Management

Physical therapy does not cure EDS, but it is one of the most effective tools for managing symptoms safely.

Physical therapy helps by:

  • Improving joint stability
  • Reducing injury risk
  • Managing chronic pain
  • Improving coordination and balance
  • Increasing functional strength
  • Supporting safe movement patterns

EDS-focused therapy is very different from traditional orthopedic rehab.

What Makes Physical Therapy for EDS Different

People with EDS require a highly individualized and cautious approach.

Emphasis on Stability Over Flexibility

Unlike many rehab programs, EDS therapy avoids aggressive stretching and instead focuses on:

  • Controlled movement
  • Mid-range joint stability
  • Muscle endurance

Low-Load, High-Control Strengthening

Exercises use:

  • Light resistance
  • Slow, controlled motion
  • Emphasis on form and joint alignment

This protects joints while building support.

Proprioception and Balance Training

Improving joint awareness reduces accidental hyperextension and injury.

Pain and Fatigue Management

Therapists help patients pace activity, manage flare-ups, and avoid overtraining.

Common Physical Therapy Interventions for EDS

Treatment plans may include:

Targeted Strengthening

Focus areas often include:

  • Core muscles
  • Hip stabilizers
  • Scapular and shoulder stabilizers
  • Lower-extremity support muscles

Neuromuscular Re-education

Improves coordination and joint control during daily movements.

Postural Training

Reduces unnecessary joint stress during sitting, standing, and walking.

Manual Therapy (Selective and Gentle)

Used cautiously to reduce muscle tension without overstretching joints.

Bracing and Support Education

Physical therapists may recommend braces or taping to improve joint safety during activities.

Activities to Avoid or Modify with EDS

Many people with EDS benefit from avoiding:

  • End-range stretching
  • High-impact sports
  • Yoga poses emphasizing extreme flexibility
  • Heavy lifting without support
  • “Pushing through” pain

Education is critical for long-term joint protection.

How Long Does Physical Therapy Take for EDS?

EDS management is typically long-term, not short-term rehab. Many patients benefit from:

  • Periodic therapy check-ins
  • Home exercise programs
  • Ongoing activity modification

Progress is measured by function, confidence, and injury reduction, not just strength gains.

When to See a Physical Therapist for EDS

You should seek care if you experience:

  • Frequent joint injuries
  • Chronic pain or fatigue
  • Joint instability or giving way
  • Difficulty with daily tasks
  • Poor balance or coordination
  • Pain that limits activity

Early intervention reduces injury cycles and improves quality of life.

Specialized Care at Cawley Physical Therapy & Rehabilitation

At Cawley Physical Therapy & Rehabilitation, we understand the complexities of Ehlers-Danlos Syndrome. Our therapists create individualized programs designed to protect joints, reduce pain, and support long-term independence.

Schedule your FREE consultation today.

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Frequently Asked Questions (FAQ)

Can physical therapy really help Ehlers-Danlos Syndrome?

Yes. While physical therapy does not cure EDS, it plays a crucial role in improving joint stability, reducing pain, enhancing coordination, and preventing injuries. Specialized programs focus on controlled strengthening rather than flexibility.

Should people with EDS stretch?

In most cases, aggressive stretching is not recommended for EDS. Because joints are already hypermobile, stretching can worsen instability. A physical therapist can determine when gentle mobility is appropriate.

Is exercise safe for people with EDS?

Yes, when properly guided. Exercise should be low-load, controlled, and focused on stability. Physical therapy ensures exercises strengthen joints safely without increasing injury risk.

Why do people with EDS fatigue so easily?

Muscles often work harder to compensate for joint instability, leading to increased energy demands and fatigue. Physical therapy helps improve efficiency and reduce unnecessary muscle strain.

Is Ehlers-Danlos Syndrome progressive?

EDS itself is genetic and not progressive, but symptoms can worsen without proper management. Physical therapy, education, and activity modification help maintain function over time.

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