HOW TO GET THE P.T. THAT YOU NEED

Why You Can’t “Just Go to the Gym” to Fix hEDS

Many people with hEDS are told that the solution is simple: get stronger. Join a gym. Lift weights. Build muscle. That advice makes sense for many bodies—but it often backfires for hypermobile ones. The reason has less to do with motivation or effort and more to do with which muscles are being trained—and what job they’re meant to do.

Big Muscles vs. Stabilizer Muscles: Different Jobs

Most gym-based exercise targets large, superficial muscles, such as:

Quadriceps and hamstrings
Gluteus maximus
Pectorals and deltoids
Latissimus dorsi

These muscles are designed to:

Propel you through space
Push, pull, and lift heavy loads
Create power across multiple joints at once

They are excellent movement muscles.

What they are not designed to do is provide fine, precise joint stability. That job belongs to a different group of muscles—often smaller, deeper, and less visible.

The Muscles That Actually Protect Your Joints

Joint stability relies heavily on deep stabilizer muscles, such as:

Spine: multifidi, deep cervical flexors, splenius capitis
Shoulder: supraspinatus, infraspinatus, teres minor
Hip and pelvis: deep rotators, segmental stabilizers

These muscles:

Act directly on individual joints or spinal segments
Turn on early, quietly, and automatically
Keep joints centered during movement

In people with stable connective tissue, these muscles do their job in the background without much thought.

In hEDS, things work differently.

Why the wrong muscles end up working too hard

When joints move too far or too unpredictably—as they often do in hEDS—deep stabilizers tend to shut down or fire inconsistently. Research shows altered muscle activation, delayed timing, and impaired coordination in hypermobility-related disorders [Rombaut 2015; Engelbert 2017].

When stabilizers aren’t doing their job:

The body recruits larger muscles to compensate
Big muscles are asked to move, lift, and stabilize at the same time
Those muscles fatigue quickly, become irritated, and often go into spasm

This is why people with hEDS often experience:

Tight, painful quads, hamstrings, neck, shoulders, or back
Flares after gym workouts that “should” have helped
The feeling that their body is always working too hard

“This isn’t a strength problem. It’s a coordination and role-assignment problem—movement muscles are stepping in to do the jobs that deeper stabilizers should be doing.”

Why Stretching or Massaging Tight Muscles Often Doesn’t Help

When large muscles are in spasm, it’s tempting to stretch them, foam roll them, dry needle or massage them aggressively. But in hEDS, those muscles are often tight because they’re protecting unstable joints. [Celletti 2015; Castori 2017] Stretching or releasing them without restoring stability can:

Temporarily feel good
Remove the body’s last line of support
Lead to more pain, instability, or flares afterward

The muscle isn’t the problem. It’s the absence of reliable stabilization underneath it that is the problem.

How Do I Know If Physical Therapy Is Right for Me?

Many people with EDS have already tried therapy. Some felt worse. Some were told to stretch more or push harder. Some left feeling blamed, discouraged, or more afraid of movement than before.

So the question isn’t just “Is PT an option?”

It’s:

Is my body asking for more support — and am I ready to try a different approach?

PT May Be Right for You If…

You Feel Unstable or Unsafe in Daily Life

If everyday tasks feel unpredictable — walking on uneven ground, standing in line, reaching overhead, carrying groceries, turning in bed — that matters.

If you feel like you’re constantly “holding yourself together,” that’s not something you simply have to accept.

PT can help your body feel steadier, more supported, and less reactive during normal life — not just during exercise.

Pain, Fatigue, or Instability Are Limiting Work, School, or Hobbies

If you’ve scaled back your job duties, reduced school participation, stopped traveling, or given up activities you care about because your body can’t tolerate them, that’s meaningful.

Physical therapy isn’t just about reducing flares.

It’s about increasing capacity — how much your body can handle.

If pain and fatigue are shrinking your world, PT may help expand it again.

You’re Afraid to Move Because You’re Afraid of Making Pain Worse

If movement feels risky…

If you hesitate before bending, lifting, exercising, or even walking farther…

If you’re constantly calculating whether something will cause a flare…

That doesn’t mean you’re weak.

It means your nervous system has learned to protect you.

The right PT doesn’t push you past fear.

It rebuilds trust — slowly, safely, and predictably.

You Feel Deconditioned After Years of Pain

Maybe you’ve been in survival mode.

Maybe activity kept backfiring, so you did less and less.

Maybe you don’t feel like the same person physically that you used to be.

Deconditioning from chronic pain is common — and it is reversible.

A good PT program doesn’t expect you to jump back to your old level.

It meets you exactly where you are.

You’ve Never Tolerated Exercise Before

It’s reasonable to think:

“I’ve never tolerated exercise. Why would this be different?”

It may be different because the approach would be different.

Exercise often fails in EDS when it:

Starts too high
Moves too fast
Ignores instability
Doesn’t respect nervous system load

EDS-informed PT starts lower, slower, and more strategically.

The goal isn’t exhaustion.

It’s building tolerance and safety.

You Want More Energy and Capacity — Not Just Fewer Flares

Sometimes the goal shifts from:

“Just don’t flare.”

to:

I want to walk farther.
I want to sit comfortably.
I want to travel.
I want to return to hobbies.
I want more life — not just less damage.

PT can help build energy efficiency and capacity — not just symptom control.

You’re Nervous About How to Move — and Want Guidance

If you feel unsure how to exercise safely…

If you don’t trust your body’s signals…

If you wish someone could help you sort out what’s safe versus what’s too much…

That’s exactly where skilled PT fits in.

You don’t have to figure it out alone.

You Want Tools — Not Just Medication

Medications can be helpful. But if you also want:

A long-term strategy
A toolbox for managing flares
Skills you can use daily
A way to improve how your body functions over time

Then PT offers something medication alone cannot: skill-building and adaptation.

You Want to Actually Improve — Not Just Mask Pain

If your current trajectory feels like slow decline…

If you’re tired of reacting to instability instead of building stability…

If you want to feel better over time rather than just cope…

Those are strong reasons to try.

You’ve Had Negative Experiences — But You’re Open to Trying Something Different

Past frustration does not mean you are a poor rehab candidate.

It may mean the plan didn’t fit your body.

If you’re open to:

Going slower than you think you “should”
Measuring progress by tolerance, not soreness
Focusing on control before intensity
Communicating honestly about flares

Then PT can look very different this time.

Reasons You Can Be Hopeful

The body can learn.

The nervous system is adaptable.

Muscles can become more efficient, not just stronger.

Stability can improve.

Coordination can improve.

Fear of movement can decrease.

Capacity can increase.

Progress may be gradual — but it can be real and sustainable.

Physical therapy for EDS is not about forcing your body into shape.

It’s about helping your body feel safer, steadier, and more supported over time.

A Different Way to Think About PT

PT may be right for you if:

You don’t want to just survive your body.
You want to build a better relationship with it.
You want guidance, tools, and long-term improvement.
You want to grow your capacity — not just shrink your life.

Even if you’re cautious.

Even if you’re skeptical.

Even if you’ve been disappointed before.

Hope in EDS doesn’t come from doing more.

It comes from doing things differently — and consistently — over time.

Why Physical Therapy May Have Been Challenging in the Past

(And Why It Can Work When Done Differently)

You may have started physical therapy hopeful — and left feeling discouraged. Maybe you were told your imaging looked normal, that you were “just flexible,” or that the exercises should help — yet instead you flared or felt more unstable.

If that has been your experience, it does not mean you failed or that PT is not right for you. More often, it means the approach didn’t match the specific needs of an EDS body.

Physical therapy can be effective in EDS — but it has to begin from the right starting point and progress in a way your body can tolerate.

Why Symptoms Sometimes Got Worse and Not Better (in the past)

There are real biological reasons therapy may have backfired:

1. Joints Weren’t Ready for Load

If exercises begin before joints can stay centered, strain increases instead of control (Castori 2012).

2. The Nervous System Was Already Sensitive

Repeated micro-stress can amplify pain processing over time (Clauw 2014). When the system is sensitized, even appropriate exercise can feel overwhelming if progressed too quickly.

3. “Fight or Flight” Was Already Activated

Chronic pain and unpredictability can keep the nervous system on high alert. In this state, muscles guard more, fatigue builds faster, and motor learning becomes harder (Eccles 2012; Engelbert 2017).

4. Proprioception Was Reduced

Joint position sense is often impaired in EDS (Rombaut 2015; Scheper 2016). You may have worked hard — but without clear internal feedback about alignment. Exercises can unintentionally reinforce strain instead of control.

5. Compensations Became Stronger

EDS bodies adapt. Bracing, locking, and gripping help you function — but if therapy builds strength without improving awareness first, those patterns get reinforced (Celletti 2015).

You may get stronger — but not more stable.

6. Emotional Overload

Repeated setbacks can erode trust. Being told to “push through” when flaring increases fear and discouragement (Castori 2012; Clauw 2014). That stress itself affects how the nervous system responds to treatment.

None of this reflects a lack of effort.

It reflects a mismatch.

Why This Is Not Your Fault — And Not Your PT’s Fault

When PT doesn’t help, people are often told it’s fear, resistance, or noncompliance. For many with EDS, that feels invalidating.

In reality, the approach simply didn’t match the physiology.

This is common in EDS. And it is not a personal failure.

It’s also rarely the fault of an individual therapist. Most PT programs provide limited training in connective tissue disorders. Traditional rehabilitation assumes stable joints and predictable tissue response — assumptions that don’t hold in EDS.

The gap is systemic - how the therapists were trained, how much education they received about connective tissue disorders in school and how much they have been exposed to quality EDS-aware care.

Most therapists genuinely want to help. They may simply not have been given the right framework or toos.

This book exists to help bridge that gap.

Why It Can Be Different

The same factors that made PT difficult before can be addressed:

Begin with stability
Regulate the nervous system
Prioritize control before intensity
Progress slowly and intentionally

When therapy starts there, the experience often feels steadier, safer, and more predictable.

It’s not about trying harder.

It’s about starting differently.

And that difference matters.

Finding the Right Physical Therapist for You — and Why You Can Be Hopeful

Physical therapy can help people with Ehlers–Danlos syndrome—when it is adapted to how their bodies actually work.

When physical therapy is designed with EDS in mind, both research and real-world experience show that meaningful improvement is possible. Many people develop better awareness and control of their joints, experience less unnecessary muscle tension, build strength without increasing instability, and feel more confident and capable in daily life. Over time, injuries and symptom flares often become less frequent—not because the body was “fixed,” but because it is finally being supported in a way that makes sense for EDS bodies [Celletti 2015; Engelbert 2017; Tinkle 2017].

When PT hasn’t helped in the past, the issue is rarely a lack of effort.

More often, it’s how therapy starts and how it progresses.

EDS-informed physical therapy puts safety first. It begins by helping the nervous system feel calmer and more secure, builds body awareness before adding resistance, focuses on alignment before increasing load, and moves forward slowly and intentionally. When therapy progresses at a pace the nervous system can tolerate, the body often becomes steadier, more efficient, and less reactive over time [Celletti 2015; Engelbert 2017; Nijs 2021].

Progress with EDS may be gradual—but it is real, meaningful, and often far more sustainable.

Regular PT vs. Hypermobility-Informed PT

Because joints, connective tissue, proprioception, and nervous system regulation behave differently in EDS, physical therapy must be structured differently.

Traditional physical therapy is often designed for bodies with:

reliable ligament and tendon support
predictable joint positioning
intact proprioceptive feedback
nervous systems that tolerate rapid load progression

Hypermobility-informed PT starts from a different understanding.

In EDS-informed care:

joint instability is assumed and actively addressed
active muscle stabilization comes before strengthening
control is prioritized before range of motion
progression is deliberately slower and sensitive to flares
alignment and timing matter more than load or repetition
end-range loading is minimized early on
dynamic movement is introduced only after stability is consistent

Research comparing rehabilitation approaches in hypermobility consistently shows that lower starting intensity, slower progression, and greater emphasis on neuromuscular control are requirements, not optional modifications [Reychler 2021; Buryk-Iggers 2022].

What “Good” Physical Therapy for EDS Feels Like

When PT is a good fit, it doesn’t feel like something you have to push through.

It feels like something your body can work with.

Good PT for EDS usually starts by helping your body feel safer, not by asking it to work harder immediately. You may notice that your therapist:

focuses on awareness before strength, helping you feel where your joints are before adding resistance [Rombaut 2015; Engelbert 2017]
emphasizes support before pushing range, avoiding end-range stretching that can increase instability [Celletti 2015; Castori 2017]
progresses slowly on purpose, paying attention to how you feel later that day and the next day [Nijs 2021]
respects and responds to fatigue and dizziness, adjusting sessions around energy levels, orthostatic symptoms, and recovery capacity [Eccles 2012; Roma 2018]
values accuracy over effort, recognizing that many people with EDS are already working very hard just to stay upright [Scheper 2016]
treats therapy as a collaboration, where your feedback shapes the plan rather than being dismissed [Tinkle 2017]

When PT is working, many people notice that movement feels less threatening, less effortful, and more predictable—even before measurable strength changes occur.

How to Find a Physical Therapist Who Is a Good Fit

A “good” PT does not need to have all the answers—but they do need to be willing to adapt.

Where to Look

Patient and community recommendations: Local EDS or hypermobility support groups (especially on social media) are often the most reliable source of referrals. People are quick to share which therapists understand pacing, flares, and instability—and which ones don’t.
Your primary care provider or specialist: PCPs, rheumatologists, geneticists, or pain specialists may know PTs who work well with complex or chronic conditions, even if they don’t advertise EDS expertise.
The Ehlers-Danlos Society provider directory: This directory can be a helpful starting point, particularly if you’re newly diagnosed or relocating. Not every listed provider will be the right fit—but many will have baseline familiarity with EDS.

📌 Questions to Ask a PT

You are allowed to ask questions. Good PT expects them.

About experience and approach

“Have you worked with hypermobility or EDS before?”
“How do you adapt rehab for people who flare easily?”
“How do you decide when it’s safe to progress exercises?”

About pacing and delayed symptoms

“How do you monitor next-day or delayed pain?”
“What do we do if something feels okay during the session but worse later?”
“Are you comfortable going slower than standard rehab timelines?”

About safety and symptoms

“How do you handle dizziness, fatigue, or autonomic symptoms during sessions?”
“What’s your approach if something feels unstable rather than painful?”
“Do you avoid end-range loading early on for hypermobility?”

About collaboration

“How much input do you want from me about what feels safe or unsafe?”
“Are you open to changing the plan if something isn’t working?”

You’re not listening for perfect answers—you’re listening for openness, flexibility, and respect.

How to Advocate for Yourself in Physical Therapy and Healthcare Settings

Advocating for yourself when you have Ehlers-Danlos syndrome (EDS) is not about being difficult, dramatic, or distrustful. It’s about helping your care team understand how your body actually works.

EDS often doesn’t look like what clinicians are trained to expect. Symptoms fluctuate. Pain doesn’t always match imaging. Strength and flexibility don’t tell the whole story. Because of this, clear communication matters—and the way symptoms are described can shape the care you receive.

This section is about giving you language, confidence, and permission to speak up.

How to Describe Symptoms Clearly (What Helps Clinicians Understand)

Many people with EDS are used to minimizing symptoms or explaining them in ways that don’t quite land. Clinicians are often listening for patterns related to stability, control, and response to load, even if they don’t say it out loud.

Instead of only describing pain intensity, it can help to include:

What triggers symptoms (even small or delayed triggers)
How long symptoms last after activity
Whether symptoms feel mechanical, unstable, or unpredictable
What feels unsafe versus just uncomfortable

Helpful examples:

“My pain increases later that day or the next day, not during the activity.”
“This joint feels like it might slip, even though I’m strong.”
“Stretching gives short relief but makes me feel less stable afterward.”
“I fatigue quickly and lose control before I feel muscle burn.”

These descriptions align more closely with what is known about joint instability, impaired proprioception, and delayed neuromuscular control in EDS [Castori 2012; Rombaut 2015; Engelbert 2017].

Language That Helps Differentiate Instability From Weakness

One of the most common misunderstandings in EDS care is equating symptoms with weakness or deconditioning.

If you’re told you “just need to get stronger,” it can help to reframe:

“I don’t feel weak—I feel unstable.”
“My muscles work constantly, but my joints don’t stay centered.”
“I lose control before I reach fatigue.”
“More resistance increases symptoms instead of improving them.”

Research shows that people with EDS often have adequate or even increased muscle activation, but poor timing, coordination, and joint position sense [Rombaut 2015; Scheper 2016]. Naming instability instead of weakness helps guide safer care.

How to Say “This Doesn’t Feel Safe” Without Being Dismissed

You are allowed to speak up during treatment.

Sometimes it helps to focus on body response, not fear:

“I feel my joint drifting when I do this.”
“This exercise increases symptoms later, even if it feels okay now.”
“I lose alignment when the load increases.”
“This feels like guarding, not strengthening.”

These statements describe objective experiences that matter in EDS rehabilitation [Celletti 2015; Engelbert 2017].

Saying something doesn’t feel safe is not refusing care—it’s providing essential feedback.

What to Do If Physical Therapy Makes Things Worse

It’s unfortunately common for people with EDS to have had prior physical therapy that increased pain, fatigue, or instability.

If this happens:

Pause and reassess, rather than pushing through
Track delayed symptoms, not just what happens in session
Share specific patterns with your therapist
Ask about modifying load, range, or pacing

Worsening symptoms do not mean you “failed” therapy. They often mean the approach didn’t match how your body responds to stress [Castori 2017; Celletti 2015].

When to Seek a Second Opinion or When to switch PTs

Seeking another opinion is reasonable—not disloyal—when:

Symptoms consistently worsen despite modifications
Instability or neurological symptoms are dismissed
Pain is attributed solely to anxiety or noncompliance
You’re told to push through repeated flares
Your concerns are not taken seriously over time

EDS is a complex condition, and not every clinician has training in connective tissue disorders. A different provider may simply have a better framework for understanding your body [Tinkle 2017].

The Goal of Self-Advocacy

Advocacy is not about challenging expertise—it’s about collaboration.

When you clearly describe how your body responds, you help your providers:

Choose safer interventions
Adjust pacing appropriately
Avoid reinforcing harmful patterns
Build a plan that works with your body instead of against it

Patient Summary: Advocating for Myself Is Part of My Care

“If I have EDS, I am not being a difficult patient when I speak up for myself — it’s helping others understand my body. My symptoms don’t always look typical, and they don’t always show up on tests. That can make it harder for others to see what I’m experiencing. When I explain what feels unstable, how my body reacts to activity, or what happens later that day or the next, I’m not complaining — I’m giving important information. My experience matters. I’m allowed to ask questions. I’m allowed to say when something doesn’t feel safe. I’m allowed to look for care that fits how my body actually works.

Advocating for myself means that I am part of my healthcare team, and I am helping my care team take better care of me when I give them better feedback on my care.”

Checklist of things to bring to your first PT appointment

Bringing this information helps your physical therapist understand how your body actually behaves, not just what shows up on paper.

☐ My Diagnoses and Key Medical History

Bring or be ready to share:

Your EDS diagnosis (or suspected hypermobility)
Any related conditions (POTS, GI issues, migraines, pelvic pain, etc.)
Past surgeries or injuries
A brief list of providers you currently see (if relevant)

You don’t need every detail—just the patterns.

☐ My Current Symptoms

Think about:

Where you feel pain most often
Joints that feel unstable, slip, or “don’t trust themselves”
Areas where you feel tight, guarded, or tense
Fatigue, dizziness, or symptoms after activity
Symptoms that show up later, not during activity

If it helps, write these down.

☐ What Makes Things Better or Worse

Consider:

Activities that flare symptoms (even if they seem minor)
Positions that feel unsafe or uncomfortable
What helps symptoms settle (rest, heat, movement, bracing, etc.)
Whether symptoms worsen later that day or the next day

This information is just as important as strength or range of motion.

☐ My Past Experience With Physical Therapy (If Any)

Be ready to share:

What helped in the past
What made things worse
Exercises you were told to avoid
Whether stretching or strengthening caused flares

This helps avoid repeating approaches that didn’t work for you.

☐ My Daily Activity Level