What Does PT for hEDS/HSD Actually Look Like?

"Well, you look fine"

I heard that my whole life before I had answers. Now I hear it from my clients — along with "I've been told I’m crazy," "everything is normal on imaging," “my MRI looks like I was hit by a car”, "it's just anxiety," and my least favorite, "I was told I'm injury prone and I’m probably not going to be able to work or function."

If you have Hypermobile Ehlers-Danlos Syndrome or a Hypermobility Spectrum Disorder (hEDS/HSD), you may have heard a few of these. Maybe you've also been through physical therapy that made things worse. You were handed a printout of generic exercises, told to push through, and left more injured — and more convinced your body is broken — than when you started.

I want to tell you what PT for hEDS/HSD actually looks like when it's done well. Not because the version you got was your fault, or even necessarily your PT's fault, but because you deserve to know the difference exists.

The research part (I promise it's short)

hEDS/HSD wasn't formally defined by its current criteria until 2017, when an international group of experts published both diagnostic criteria and a management framework. That's recent. Many practicing clinicians finished their training before this framework existed.

What the research since then consistently supports: people with hEDS/HSD benefit from exercise, particularly programs built around proprioception (your sense of where your body is in space) and progressive strengthening — but the dosing and delivery matter enormously. Studies on proprioceptive and stabilization exercise show meaningful improvements in pain and function in hypermobile populations. What doesn't work is the standard orthopedic playbook applied without modification. Hypermobile tissue responds differently to load. Joints that hyperextend need to learn to work in mid-range. And a nervous system that's been through years of unexplained pain needs a different on-ramp entirely.

The research says exercise works. Experience says how you get there is everything.

The first visit:

Before your first appointment with me, I tell you the same thing I'll tell you for our entire time working together: I want to know all the details you feel comfortable sharing.

That means today's primary issues, but also every orthopedic issue you can remember. Your medical history. Screening questions for MCAS and dysautonomia, because in this population they travel together and they change how I work with your body. Your diagnostic history, your current providers, your medications and supplements. Education gets woven in along the way — and sometimes we brainstorm together about what might be contributing to symptoms nobody has connected yet, or how to communicate with your other providers so you're actually heard.

You deserve to be listened to. That should not be a luxury; it's important.

Then I watch and feel how your joints move. I do a full-body scan built on a biomechanical model — not just where it hurts, but how you move. There's a metaphor I use constantly: you can't tell a car has a wheel with three snapped screws while it's parked in the lot. You have to watch it drive. A shoulder exam done lying on a table tells me almost nothing about why your shoulder hurts when you reach into a cabinet. So much of conventional PT evaluates the parked car. An unnecessarily dramatic illustration of my point below:

Reminder: your wheel is not, in fact, about to snap off.

Back to the first visit:

From there we assess the fascial system — the connective tissue network that, in hypermobile bodies, is often where the real story lives. This isn't hand-waving/voodoo magic stuff: it’s based on a growing body of research, including a 2025 review by Dr. Tina Wang and colleagues, which points to fascial dysfunction as a central driver of pain and instability in hEDS/HSD — altered connective tissue that's more extensible, layers that don't glide the way they should, and deep fascia that thickens and refers pain. (That's a whole blog post of its own, coming soon.) And here's a piece that matters: hands-on assessment is adjusted based on your mast cell status, your inflammation, and your preferences. If your last PT experience was traumatic, we go slower. No judgment, no shame, no guilt.

My visits are 60 or 90 minutes. Every visit, not just the first one. If you're coming from in-network PT, where evaluations get compressed into a fraction of that and follow-ups are shared with two other patients, I know how foreign that sounds. It's not because I'm fancy. It's because this work cannot be done in less.

Not just a generic home exercise program or strengthening:

Here is probably the biggest difference in my approach: I have to earn your trust before I load your body.

Many of my clients arrive circling the entire body chart. Widespread, unnameable, exhausting pain. Conventional wisdom says start strengthening. I don't. My first goal is helping your pain become locatable — moving from "my whole spine" to "my fourth rib on the left." That shift sounds small. It's enormous. A pain you can point to and name is a pain you can treat, and a pain you can treat yourself between visits.

Once pain has an address, we introduce movement — with an emphasis on bone stacking and precision, which demands real proprioceptive control. This is where the research and my practice fully agree: proprioception is the foundation.

I'll be honest with you about where the science stands, because you deserve clinicians who are. Research on hEDS/HSD keeps landing on the same theme: unstable, poorly-tracking joints create biomechanical overload and repetitive microtrauma, and that's a major driver of pain. That part is well-studied. What's not yet well-studied is the correction — there's very little research testing specific hands-on techniques in hypermobile bodies. So this is where I lean on clinical reasoning and years of close observation: hands-on work and precise movement retraining to help your bones stack and track better, then teaching you to do it yourself. The evidence for why you hurt is strong; the evidence for exactly how to fix it is still being written — and "still being written" is not the same as "nobody knows." It means the science is catching up to what already helps.

And when pain shows up during movement — because it will — I'm right there with you. We problem-solve it in the moment. Is it mechanical? Instability somewhere along the chain? Stiffness? Something a cue or position change can fix? You experience the pain, but not alone — with someone who isn't afraid of it. That matters more than almost anything else I do, because so many of my clients have been conditioned to believe they're fragile and falling apart. Fear of movement sets in, movement stops, and in this population, not moving is what actually causes decline.

I also teach clients to "collect data" instead of immediately reacting to pain: pause, think critically, try modifying the position or the intent of the movement first. Pain becomes information instead of an alarm you can't turn off.

What change actually looks like

The story I see on repeat: someone arrives having checked every box on the intake form. Years of doctors, negative imaging, strange symptoms nobody connected — rashes, constipation, heat intolerance, urinary issues. Frustrated doesn't cover it.

With a trusted provider you can make meaningful change. My treatment style is heavily based on getting bones stacked and tracking well, and treating the soft tissues that are symptomatic. Along the way, I refer out to providers who understand this population, and we work on how to communicate with doctors so appointments actually go somewhere. When you are ready, the corrective and stabilizing exercises can be added and you start noticing positive changes in how you interact with the world.

None of that happens because I'm magic. It happens when someone finally listens to the driver and watches the car drive.

If your PT experience hasn't looked like this

It may not be your PT's fault. Some physical therapy clinics run on certain demands that don’t need to be listed here. But you're allowed to want more than the system's default — and you're allowed to ask and should ask any PT: Will you watch me move and exercise, not just examine me? Do you modify your approach for hEDS/HSD? What happens when something hurts?

Good help is out there. Bodies like ours are not broken — the world is still learning about them. There is hope, and it doesn't require you to push through anything.

If this resonated and you'd like to connect — as a client or just as a fellow community member — I'd love to hear from you.

Your Floppy Friend,

Sarah