Many people with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) arrive at movement therapy after years of trying everything possible to address pain and instability. Standard physical therapy may have helped some of the time, but not consistently, and is often not adapted for bodies with symptomatic hypermobility.
At The Zebra Club, we take a different approach using the Integral Movement Method — a movement therapy approach developed by Jeannie Di Bon after more than 17 years of working with hypermobile clients and rehabbing her own hypermobile body.
Movement therapy for hEDS and HSD works best when it starts slow, calms the nervous system before building strength, and adapts to a body that already moves too far. Three Zebra Club members share what changed when they tried that approach after years of standard physical therapy.
Key takeaways
- All three members tried traditional physical therapy first — in one case for over two years — before finding lasting relief.
- The shared turning point was slowing down, not pushing harder.
- Walking distance increased dramatically in two of the three stories: 10 metres to 2.5km, and one block to 3 miles a day.
- Community support mattered as much as the exercises themselves.
- Change took months, not days, in every story.
Ian: from 10 metres to 2.5 kilometres
Before Ian joined The Zebra Club he could barely walk 10 metres from his bedroom to his bathroom without holding onto the walls in pain. After building up one rep at a time, he now walks 2.5km, works part-time, and has come off long-term pain medication.
Before, in his words:
"Walking the 10 metres from bedroom to bathroom (no stairs) was taking a number of minutes, holding onto the walls, almost in tears from pain. I felt at times that the whole of my left side was giving up on me."
After, in his words:
"First, with every step I was in pain, but this has greatly reduced; I can walk around about 2.5km (1.5 miles). I've carried on working part-time."
Tanya: from one block to 3 miles a day
Before The Zebra Club, Tanya couldn't walk more than one block or carry her own groceries, after two and a half years moving between physical therapists with no improvement. She now walks 3 miles a day and no longer takes medication for sleep or POTS.
Before, in her words:
"I was only able to walk about one block before my symptoms became much worse. I was not able to carry groceries, push a shopping cart, or put away groceries."
After, in her words:
"I am now able to walk 3 miles every day or longer if I want to. I am able to be up all day without needing to lie down to rest. I can cook a full meal, wash dishes, and still go for a walk after dinner with no symptoms."
Christy: from a weekly pain list to none
Christy had already spent two years working one-on-one with an EDS and POTS-aware physical therapist before joining The Zebra Club, and was still managing a weekly list of pain. A year in, she sometimes arrives at appointments with nothing on that list at all.
Before, in her words:
"Before I joined The Zebra Club, I had been working in-person with an EDS and POTS specialized Physical Therapist for two years. So, I was in a good starting place. I'd made progress and 'graduated' from their program, but I still had pain and flaring."
After, in her words:
"Since joining The Zebra Club a year ago, that list of pain has gotten a lot smaller, and lately, sometimes I walk in to see my chiropractor or massage therapist and I don't have any list at all! It's a bizarre and wonderful thing."
"I came for the exercise, but I stayed for the people."
What these three stories have in common
Three people, with different starting points, but their stories tell some common patterns.
All three tried conventional physical therapy first
Ian saw around 20 physiotherapists before joining The Zebra Club. Tanya worked with four different physical therapists over two and a half years. Christy had already graduated from a two-year one-on-one program with an EDS and POTS-aware physical therapist and was still working from a weekly pain list when she found us.
The shift happened when they took a different approach to movement
Slower, fewer reps, rest counting as part of the plan, not failure.
Ian described his version of "slow and low" as lying on his mat, trying to relax and let go of tension. Tanya spent her first weeks doing meditations to calm her nervous system before attempting any movement. Christy's turning point was a shoulder stability class where she realised, after two years of one-on-one physiotherapy, that she had never learned which muscles she was supposed to be engaging.
Change took time
For Ian, it took three months just to complete one class at full reps. Tanya was doing a couple of videos a week at the start. Christy spent her first months in the pain management section of the platform.
None of our members describes a single breakthrough moment. The change accumulated.
All three credit the community as part of what made the difference
Ian had never used social media before joining. Christy described it as something like finding a family reunion of biological relatives after a lifetime of not knowing they existed. Tanya found hope and company at a point when her world felt like it was getting smaller.
How to start movement therapy safely with hEDS or HSD
These three members also shared very similar advice that they learned through their IMM journey in The Zebra Club.
Begin with the nervous system, not the muscles
The classes and the pathways all start with breath and relaxation before movement. For many of us, when we have spent years in pain or going from flare to flare, this is what makes the difference. The exercises can wait until your nervous system is ready for them.
It's ok to start with one rep
Ian spent three months building to full reps on a single class. That is not a slow start; that is the correct start for what his hypermobile body needed for recovery after years of compensating with the wrong muscles.
Christy noticed visible muscle definition before she had ever completed a challenging class at full intensity. The body adapts on its own schedule, and no two schedules are the same.
Use the community when you are unsure
All three members describe asking questions in the community as a turning point. Ian was embarrassed to ask. He did it anyway and describes it as one of the most useful things he did.
The Zebra Club has more than 3,000 members worldwide managing hEDS, HSD, POTS, MCAS, and related conditions. Someone has asked your question before.
Recovery is not linear
Every story here includes the reality of life with chronic illness. That is part of the process, not evidence the process is not working. Life happens. The flares become fewer and further between.
If you want to find out whether this approach works for your body, join The Zebra Club here.
