Hypermobility, Ehlers-Danlos Syndrome & Physical Therapy

Estimated reading time: 9 minutesHave you been referred to physical therapy or physiotherapy to manage your symptomatic hypermobility?

For many of us with hypermobility or EDS, this is often the first line of treatment. While there are some fantastic and helpful EDS/HSD-aware physios, I hear so many reports from my clients and in The Zebra Club about physical therapy (PT) leading to increased pain.

I first started educating physiotherapists and teachers in my Integral Movement Method (IMM) for Polestar Pilates UK. I also presented this course to several NHS Foundations – helping pain specialists and physiotherapists understand more about effective movement strategies for hypermobile patients.

In 2022, I began a successful collaboration with The Ehlers-Danlos Society and their EDS ECHO educational platform to bring my Foundations of the IMM to a global audience online.  As of today, we have run six fully subscribed courses, and number seven starts in September.

As awareness of hypermobility conditions like EDS grows in the physical therapy world, the IMM course now attracts physiotherapists seeking safe movement practices for hypermobile patients. PTs increasingly want evidence-based approaches for managing chronic pain, fatigue, and joint instability.

The IMM integrates into a PT’s therapeutic toolkit—not replacing traditional therapy, but enhancing it and providing a framework specifically designed for hypermobile patients.

An attendee of the IMM EDS Echo program was Aiko Callahan, a PT from the Boston area who specializes in hypermobility. Aiko has incorporated the IMM into her practice and now offers local mat-based classes for her hypermobile community.

I’m delighted to partner with Aiko, who shares her perspective on PT and the IMM in this blog. We’ll examine how PT benefits those with EDS/HSD, review research on PT for hypermobility, explore IMM applications in therapy, and address common treatment concerns.

How can physical therapy help with Ehlers-Danlos and Hypermobility?

Living with EDS and HSD presents unique challenges, and finding ways to manage symptoms can be difficult.

One key tool in the journey toward better function and pain relief is physical therapy, but not all approaches are created equal. If possible, we want to seek an EDS/HSD-trained or aware practitioner, or at the very least, someone who is empathetic and willing to learn more.

Benefits of physical therapy to treat hypermobility pain include:

• Rehabilitation level strengthening
• Symptom management, particularly learning self-management strategies
• Evidence-based approach, supported by scientific literature
• Focus on functional movement

It is important to note that, still today, there is a lack of guidelines and consensus on physio interventions or exercise guidelines to treat and restore function in people with hEDS/ESD, which can make it challenging for PTs to treat patients (1, 2).

Manual Physical Therapy and EDS

Manual therapy can be a powerful tool in the PT’s toolkit, though not all PTs utilize manual therapy to the same degree.

Many of us do further training beyond PT school to become expert manual therapists, through continuing education, residencies, and fellowships

I like to think of manual therapy as a way to decrease the barrier to movement. If an intervention helps to decrease pain and create greater ease of movement, it tends to encourage the patient to engage in more movement throughout their day.

I always smile when a hypermobile patient looks at me after some manual therapy technique and says, “Oh, is THIS what most people feel like when they move? It’s so much easier!”

Sometimes, PTs shy away from manual therapy with hypermobility because they think it is too passive, or because they believe globally that mobilization is detrimental in hypermobility.

In the hypermobile body, an area of hypomobility (decreased joint movement) can make other areas compensate for it, which leads to hypermobility in those compensatory areas. This area can then become painful.

This is why sometimes the pain bops around from spot to spot; the body may be trying to compensate for poor mobility in one area, and is trying to shuffle around where in the body it compensates.

Ultimately, the area of hypomobility needs some mobility restored, and the compensating hypermobile areas need stability restored.

There are differences in the types of Physical Therapists you may see

After attending graduate school (for those based in the US), physical therapists can choose to specialize and become board-certified in a specialty, such as orthopaedics, sports, neurology, cardiopulmonary, and more. This can be differentiated further based on personalities, hobbies, and interests.

As someone who grew up dancing and went to different PTs myself when I was injured, it was quite clear that I fared better when I went to see a provider who understood what my goals and expectations were as a dancer.

My first PT told me, “Just don’t lift your leg that high,” and it became apparent that he didn’t value my goals, as lifting my leg that high was a crucial piece of getting back to the activity that was so important to me at the time. I moved on to a PT who did understand dance, and it was a much better experience.

The practice environment can also shape which approach a PT has the option to take. Early in my career, I worked in a place where I had a student PT with me, and we had a new patient every 15 minutes; it is very difficult to deliver good care in an environment where you are running between multiple patients!

Now I run my own practice and am able to spend an hour with patients, allowing us to really address their needs.

Does the approach to Physical Therapy have to be changed for hEDS/HSD?

I find that most often the approach to treatment needs to be modified, and that modification must be personalized.

These are ways I find I need to adjust treatment to work with my hypermobile patients:

• Screening: Screening and assessment of other body systems is important given the multi-system presentations in hEDS/HSD. Since PTs often see patients more frequently than other providers, we also have more chances to assess a patient, to see both their good days and their bad days.
• It’s not a linear progression: The provider should understand that the presentation will fluctuate and see that not as the patient making things up; we see it as a body that is working very hard to compensate and find some relief. We give options for good days and bad days.
• We need to find a sense of safety: Neurodiversity also requires that we, as providers, pay attention to things that promote a feeling of safety for all patients. If sounds, smells, lights are overstimulating, we need to remove those stimuli or tone them down as best we can to create the greatest sense of safety so that the patient can engage with physical therapy and have a positive association with movement; this can be hard to do that when the environment is encouraging the fight or flight response.
• Effective communication is key: We may also work to speak the same language in terms of description; “is it your ‘usual pain, or is it the ‘stabby’ pain?” Since sometimes the line between a noxious sensation and what one might consider pain can be a bit blurred, I find that specific descriptors to name the pain can be much clearer when trying to see what aggravates or alleviates symptoms. (i.e., “Did the thoracic mobilizations decrease your ‘stabby’ pain with reaching the arm overhead? Yes? Wonderful. But now you notice ‘tight’ pain? Let’s look into that.”
• Progressing slowly: As PTs, we love to progress exercises, but with hEDS/HSD, the timeline for this is usually longer than what we see with the general population. This requires that exercises are not progressed all at once, and that the form with exercises is checked regularly.

Jeannie: The IMM can be effective for working with neurodivergent patients, prioritizing nervous system regulation, feelings of safety, sensory awareness, and pacing.  The IMM brings grounding to help the internal body signals feel safe.  Offering permission-based practice – whatever feels right for the patient is key.

We are not seeking perfection, but a gentle invitation to move if it feels good.

What if physical therapy has made my pain worse in the past?

If you have found your pain has worsened after PT in the past, I would tell you that you are not alone.

I would also encourage you to try again with a different PT and look for one who is EDS-knowledgeable.

It is important to think about why you had worsening pain and let your new PT know.

• Was someone watching your form consistently?
• Did you feel believed when describing your symptoms?
• Did you jump right into exercises that were too irritating?
• Were you experiencing a flare in other symptoms at the same time?
• For some, seeking treatment for co-occurring diagnoses can help (such as managing MCAS, or following up with pain management).

My Experience with The IMM and Physical Therapy

I became interested in the IMM after having several patients mention it to me, particularly when they noted improvement in certain symptoms that did not respond to physical therapy.

Taking the IMM Echo course made me consider the words I used for cueing, and I appreciated all the options for movement there were in the IMM prior to getting to the level of PT exercises.

The IMM is a fantastic complement to physical therapy. I have seen firsthand how it helps where traditional physical therapy could not. Especially for those with high levels of pain, fear of movement, and altered perceptions of their body.

I think the IMM is amazing for getting people to the point where they can tolerate PT level exercises, and it is also fantastic for maintenance and progression.

The IMM utilizes several principles that build upon one another: breath, relaxation, proprioception, stability, and balance. In physical therapy, we tend to jump right into stability work, where a lot of hypermobile individuals need to start with breath, relaxation, and proprioceptive work.

Starting with stability can often backfire, as hypermobile patients may not recognize that they are over-recruiting muscles or may have very poor awareness of how they are holding their bodies.

If you cannot recruit muscles appropriately, it is crucial to work on quality prior to quantity to ensure the right muscles are being built up; otherwise, you are simply beefing up your compensatory strategy, rather than correcting the issue.

PTs also struggle with appropriate referral for patients after rehabilitation, as they tend to see patients for a shorter course of care due to insurance limitations. While we can recognize that a hypermobile patient needs more than just a short course of PT, insurance typically sets a limit to this benefit.

And given that we know from To & Alexander 2019 (3), hEDS/HSD tends to present with a much weaker baseline compared to the general population, having access to a low-cost program like The Zebra Club is a wonderful option to have.

Jeannie: The IMM is built on six foundational principles which can provide PTs with a framework of how to progress patients through rehab and exercise.

Breath, Relaxation, Proprioception, Stability, Balance, and Posture. These principles are not applied in isolation but work synergistically to support the nervous system regulation, build both physical and emotional resilience, and promote sustainable movement patterns in hypermobility.  The first research paper on this method was recently published (4).

Tips for finding an EDS/HSD aware Physical Therapist

Ask your local EDS groups, or the Ehlers Danlos Society has a listing as well. You can also look into providers who may specialize in hypermobility sports or even other medical specialties, depending on your ability level.

What if you can’t find a physical therapist aware of hypermobility?

If you can’t find one that is EDS aware, your best bet is to find one who is curious and interested!

• Do your best to educate, preferably with peer-reviewed journal articles. Providers respond to good quality research that is clinically relevant to their practice. This really helps to validate that you are coming from a place of rigorous research.
  • Two of my favorite articles to give to providers who are just starting in symptomatic hypermobility care are Dr. Leslie Russek’s 2019 article Recognizing and Effectively Managing Hypermobility-Related Conditions and Leslie Nicholson’s 2022 article International Perspectives on Joint Hypermobility: A synthesis of current science to guide clinical and research directions. Both articles do a phenomenal job of describing and summarizing EDS/HSD as a complex and varied presentation.
• I also tend to recommend books (Disjointed and Taming the Zebra are my favorites for educating the new-to-EDS PT). Jeannie’s book, Hypermobility Without Tears, is a great intro to The IMM and movement therapy approach to hypermobility. Jeannie also has a new book coming out later this year, designed for practitioners and patients alike.
• And of course, the Ehler-Danlos Society’s EDS ECHO program; I really cannot say enough about this program and how helpful it was (and still is) to me as a provider. Peer-to-peer case review/mentoring with an EDS-knowledgeable provider can also be helpful for the PT who is new to managing hypermobility.
  • Jeannie’s The EDS ECHO Fundamentals of the Integral Movement Method (IMM) course was a huge asset to my approach. You can find movement professionals (including PTs & Physios) who have completed this certification in the IMM directory.

Tips for getting started with Physical Therapy & Movement

• Figuring out your barriers to movement is a good place to start. If pain gets in your way, look into why that pain is there. Is it a nerve getting pinched or pulled as you try to move? Is it that all of your muscles try to work, creating too much tension?
• Focusing on unwinding (breath and relaxation) can be incredibly helpful if you are someone who tends to find themselves feeling more pain due to excess muscle activation.
• As I mentioned above, The Zebra Club is a great place to start with hypermobility safe movement – you can really focus on the unwinding with the guided videos.
• When you get to strengthening, know where you’re supposed to feel the muscle working. This can be very helpful in identifying whether you are compensating or not.

Jeannie: The IMM isn’t here to replace what PTs do so well. It can be a valuable partner. It offers an additional lens through which we can support our complex, chronic, and often misunderstood patients who have EDS / HSD and chronic pain.

By integrating principles like breath, relaxation, and proprioception early on into treatments, we can help patients feel safe, connected, and gain a sense of self-efficacy. For many therapists, learning the IMM has deepened their understanding, improved patient outcomes, and given confidence in movement strategies that are safe and effective for patients.

In this community questions video, Jeannie shares some tips for finding a physical therapist, along with some others.

FAQ

Can physical therapy help Ehlers-Danlos syndrome?

Physical therapy can be helpful for EDS, but it is best to work with a therapist who is EDS aware and will listen and learn with you. People with EDS and HSD require a different and modified approach to traditional physical therapy.

What is the best treatment for hypermobility syndrome?

There is no best treatment for hypermobility syndrome as it is a multisystemic condition that affects everyone to a different level of severity. Safe and effective movement can be an excellent way to reduce pain and improve stability and strength to support joints.

Jeannie Di Bon

Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.

Aiko Callahan

Aiko Callahan, PT, DPT, OCS is the owner of a small solo physical therapy practice west of Boston, MA that specializes in the health and wellness of individuals with hypermobility, including the artistic population and those with hypermobility-related connective tissue disorders such as hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorders (HSD.)  She has presented for the Ehlers-Danlos Society, The International Association of Dance Medicine and Science, the Northeast APTA Conference, and The Zebra Club, as well as many talks for her local community on symptomatic hypermobility.

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