Understanding Acute and Chronic Pain in Ehlers-Danlos Syndrome: A Physical Therapist’s Perspective

Living with Ehlers-Danlos Syndrome (EDS) often means living with pain—sometimes daily, sometimes unpredictable, and often misunderstood. As a physical therapist, I’ve had the privilege of working with many people who have EDS. One of the most common (and frustrating) struggles they face is pain that seems to come from everywhere, all the time—or pain that flares up after something as simple as reaching, walking, or sleeping in the wrong position.

In this post, I want to talk about why pain happens in EDS, the difference between acute and chronic pain, and most importantly—what we can do to help.

First, You Are Not Overreacting

Let’s get this out of the way: Your pain is real. Whether it’s a sharp twinge in a joint, a deep ache in your muscles, or an all-over soreness that never seems to go away—it’s not "just in your head", and it deserves proper care and understanding.

Pain in EDS isn’t simple, but when we understand what’s happening, we can begin to take back some control.

What’s the Difference Between Acute and Chronic Pain?

Acute pain is what most people think of when they hear the word "injury." It’s pain that happens suddenly—like when a joint slips out of place or a muscle gets strained.

Chronic pain, on the other hand, is the kind that sticks around. It might not be tied to a specific injury, and it often lasts for months or even years. In EDS, many people live with a mix of both types of pain.

Let’s break them down:

Acute Pain in EDS: The Pain That Flares Up Fast

With EDS, your joints are more mobile than usual—they move too much, and that can lead to:

• Dislocations or subluxations (when a joint partially slips out)

• Sprains or strains

• Muscle overuse from constantly trying to keep joints stable

This kind of pain tends to come on quickly and may feel sharp or intense. Even small movements—like stepping off a curb, opening a heavy door, or rolling over in bed—can cause a flare.

How PT Can Help Acute Pain:

• Teach you safe movement strategies to avoid re-injury

• Use bracing or taping to help support unstable joints

• Guide gentle exercises to reduce pain and improve control

• Show you how to manage pain without pushing too hard

Chronic Pain in EDS: The Pain That Sticks Around

Chronic pain is often harder to explain. It may feel like:

• Constant aching or burning

• Muscle tightness or spasms

• Feeling like your whole body is sore or tired

This type of pain may not come from one specific injury—it’s often the result of your body working too hard for too long. Over time, your nervous system becomes extra sensitive, and things that shouldn’t hurt—like light pressure or normal movement—start to feel painful.

This is called central sensitization, and it’s common in people with EDS.

How PT Can Help Chronic Pain:

• Help you understand why your body feels this way

• Focus on gentle, consistent movement to reduce pain over time

• Strengthen the muscles that support your joints, safely

• Use pain science education so you can better manage flare-ups

• Support you in pacing—finding the right balance between rest and activity

What You Can Expect in Physical Therapy

If you’ve had bad experiences with PT in the past (and many EDS patients have), know that it doesn’t have to be that way. A therapist who understands EDS will go at your pace and work with you—not push you through a cookie-cutter routine.

A good physical therapy plan for EDS includes:

• Education: Understanding your body is powerful.

• Stabilization exercises: Small movements that build joint support.

• Posture and body mechanics: Learning how to move without stressing your joints.

• Breathing and relaxation: Calming your nervous system helps reduce pain.

• Supportive tools: Braces, tape, or mobility aids when needed (not forever, just when helpful).

You're Not Lazy. You're Not Broken.

One of the hardest parts of living with chronic pain—especially with a condition like EDS—is the emotional toll. It can feel like your body is fighting against you. You may feel guilty for needing rest or frustrated that others don’t understand what you’re going through.

But here’s what I want you to remember:

• You’re not weak—you’re navigating a body that works differently.

• You’re not imagining it—EDS pain is complex, real, and valid.

• You’re not alone—there’s a growing community of providers who truly get it.

Final Thoughts: Progress, Not Perfection

Managing pain in EDS isn’t about “fixing” everything overnight. It’s about learning how to work with your body instead of against it. It’s about building strength, stability, and confidence—one small step at a time.

If you're living with EDS and feeling stuck in a cycle of pain, know that physical therapy—when done right—can be a powerful part of your support system.

Let’s work together to help you move better, feel safer in your body, and get back to doing more of what you love.

Looking for a PT who understands EDS?

Our physical therapists at Intrinsic Physical Therapy are expertly trained in hypermobility and related conditions and we’re here to help! 

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