“I miss feeling like myself.”
That was one of the first things my patient said during our initial physiotherapy consultation.
Not “I want to get stronger.”
Not “I want to go to the gym.”
Not even “I want my pain to go away.”
They wanted their life back.
Before we met, pain and fatigue had slowly taken away the things that once gave their days structure and meaning. Activities that many people take for granted—getting ready in the morning, walking around the shops, preparing meals, socialising with friends—had become unpredictable. Eventually, working became impossible.
They were unemployed, not because they lacked motivation or ambition, but because their body could no longer keep up with the demands of everyday life. This is a reality many people living with Hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorder understand deeply.
When every movement comes with a cost, exercise can feel like an unrealistic expectation. “Just exercise more” can feel like the least helpful advice in the world.
Because when your body already feels exhausted, painful and unpredictable, the idea of adding more demands can feel overwhelming. But what if we changed the way we thought about exercise? What if exercise was not something separate from life? What if movement was not about pushing through symptoms, but about rebuilding trust and confidence in the body?
For this patient, the first step was not a gym membership.
It was not lifting heavy weights.
It was finding movement that felt achievable.
We started with hydrotherapy. Being in the water provided a different environment—one where gravity was reduced, joints felt supported and movement felt less threatening. The water allowed them to experience something they had not felt in a long time:
“I can move, and my body is okay.”
Hydrotherapy was not the destination. It was the bridge. It provided a safe environment to begin rebuilding tolerance, confidence and connection with movement. From there, we introduced Pilates-based exercises. Not because Pilates is a magical solution for hypermobility, but because it provided an opportunity to develop control, body awareness and strength in a supported environment. Early sessions were not about pushing limits. They were about learning.
Learning how to activate muscles.
Learning how to control movement.
Learning how to recognise that discomfort does not always mean damage.
Learning that the body could be challenged without being harmed.
Progress looked different from what many people expect. A successful week was not always increasing resistance or completing more exercises. Sometimes success was attending consistently. Sometimes it was recovering faster after activity. Sometimes it was doing something without fear.
One of the most important lessons in hypermobility rehabilitation is that support does not mean weakness.
Sometimes the right support allows people to do more. For this patient, small adaptations made a significant difference. Finger splints helped provide stability during tasks where the small joints of the hands felt vulnerable. A knee brace improved confidence during activities where the knee felt unpredictable. Training equipment was carefully selected to allow gradual strengthening without overwhelming sensitive joints.
These supports were not intended to replace strength.
They created a foundation where strength could develop. A common misconception is that using braces or adaptive equipment means someone is becoming dependent. In reality, many people use supports in the same way athletes use equipment.
A runner chooses the right shoes.
A cyclist adjusts their bike.
A musician chooses an instrument that suits their body.
The goal is not to fight the body. The goal is to work with it. Building strength slowly and differently Eventually, we introduced a more structured strengthening program. This was not a quick transformation. There were no dramatic overnight changes. Progress was slow, careful and individualised. With hypermobility, strengthening is not simply about making muscles stronger. It is about teaching the body how to use strength effectively.
We focused on gradually improving:
tolerance to load
movement control
confidence with activity
endurance for daily tasks.
Some days were better than others. Some weeks required adjustments. The program was not linear because the human body is not linear.
A flare did not mean failure. A setback did not erase progress. Each experience provided information about what the body needed next.
The focus shifted from: “How much can I do?” to “How can I build a body that can keep doing the things I love?”
Eventually, something remarkable happened. My patient returned to work. But perhaps the most meaningful part was not simply returning to employment. It was returning to something that felt like them.
They found work in the creative world of art.
For many people, this would be considered the end goal. But rehabilitation does not end when someone returns to work. Life continues to present new challenges. And this was where the next stage of the journey began.
Creating art may appear to be a gentle activity, but for someone with hypermobility, painting can place significant demands on the body. Holding a paintbrush for extended periods requires sustained grip strength. Fine brush movements require precise control of the fingers and wrist. Maintaining a position at an easel challenges the neck, shoulders and upper back. Standing for long periods requires endurance, balance and tolerance to upright activity.
For someone who had previously experienced pain and fatigue, these small demands could quickly accumulate.
The answer was not “Stop painting.”
The answer was “How can we make painting sustainable?”
One of the most important principles in rehabilitation is understanding that adaptations are not signs of limitation.
They are tools that allow participation. The painting process itself was modified. Thin paintbrush handles, which required a tighter grip and increased strain through the small finger joints, were adapted with larger grips to reduce the force needed. This allowed the hand to work more efficiently and reduced fatigue during longer painting sessions. Finger splints continued to provide support during activities where joints felt unstable, allowing creativity without constantly fighting against pain.
The workspace was also reconsidered: The height of the easel. The position of the chair. The distance from the canvas. The placement of materials. The ability to alternate between sitting and standing. These small environmental changes reduced unnecessary physical demands and helped preserve energy for the activity itself.
Sometimes rehabilitation is not about changing the person. Sometimes it is about changing the environment around them.
Another important part of returning to art was learning how to manage energy. Many people with chronic pain and fatigue experience the “boom and bust” cycle.
A good day arrives.
Energy returns.
They try to catch up on everything they have missed.
They paint for hours. They feel proud of what they achieved. Then their body demands several days of recovery. This cycle is not a lack of discipline. It is often a sign that the body’s current capacity and the activity demand are mismatched. Pacing allowed creativity to become sustainable.
Instead of asking: “How much can I do today?”
The question becomes: “How can I continue doing this tomorrow?”
The aim was never to reduce life. The aim was to protect participation. Strengthening for the things that matter.
Interestingly, returning to art also helped guide the strengthening program. Exercise became more meaningful because it connected directly with life goals. Hand and forearm endurance supported painting. Shoulder and upper back strength helped with working at an easel. Trunk control improved tolerance for sustained positions. Lower limb strength improved the ability to stand and move around the workspace. Exercise was no longer simply a list of tasks to complete.
It became preparation for living; finding exercise in everyday life.
One of the biggest misconceptions about exercise is that it needs to look like a formal workout.
For many people with hypermobility, meaningful movement comes from reconnecting with everyday activities: Walking to the local cafe, gardening, cooking, playing with children, taking public transport, creating art, exploring hobbies.
These moments are not “less than exercise”. They are often the reason we exercise in the first place. Incidental exercise—the movement we naturally accumulate throughout the day—can be incredibly valuable because it builds capacity in a way that is connected to real life. A person who has spent years avoiding movement because of pain does not necessarily need more pressure.
They need more opportunities to move safely and confidently.
This patient’s journey was never simply about becoming stronger. Strength was important. But the real goal was participation. It was returning to work. Creating art. Having independence. Feeling capable again. For people with hypermobility, exercise should not be viewed as a punishment or a test of willpower. It should be a pathway back to the things that matter.
Sometimes the first step is a pool. Sometimes it is Pilates. Sometimes it is a finger splint, a knee brace or an adapted piece of equipment. Sometimes it is learning to paint again. Because the ultimate measure of rehabilitation is not how many exercises someone can complete. It is whether they can return to living the life they value.
And sometimes, the most powerful form of exercise is simply being able to participate again.
References
Tinkle B, Castori M, Berglund B, et al. Hypermobile Ehlers-Danlos syndrome: Diagnostic criteria and management considerations. American Journal of Medical Genetics Part C. 2017.
Simmonds JV, Keer RJ. Hypermobility and the hypermobility syndrome. Manual Therapy. 2007.
Smith TO, Easton V, Bacon H, et al. The relationship between benign joint hypermobility syndrome and psychological distress: a systematic review. Rheumatology. 2014.
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If you'd like personalised support with rebuilding physical capacity and movement after changes in your symptoms, Physiotherapist Blanche Leung consults at BJC Health. Book an appointment here |