"For the first time, someone connected the dots." The Girl Who Spent Years Wondering Why Her Body Hurt.
Topic: Hypermobility associated disorder, growing pains
This story is inspired by the many people we've cared for over the years. Names and details have been changed and combined to protect privacy. If you recognise yourself in this story, you're certainly not alone.
Millie’s story
Millie couldn't remember a time when her body hadn't ached. As a child, everyone called them growing pains. Her legs hurt after school, her knees ached at night and sometimes she cried because her ankles hurt so much, but by the morning she was running around again as though nothing had happened.
People told her she'd grow out of it. She never really did and by her teenage years, the aches had spread. Her lower back was constantly sore and she developed regular headaches.
Sitting through lessons became exhausting because she could never seem to find a comfortable position. Everyone else sat upright with ease, while she found herself curling one leg underneath her, leaning on one elbow or constantly shifting in her chair without really thinking about it.
Every morning began the same way. Before she even got dressed, she'd stretch, wriggle and gently click her back, fingers, neck or hips. It was the only way she could make her body feel comfortable enough to start the day. She assumed everyone felt this way.
Over the years, Millie saw different healthcare professionals. Each appointment left her feeling more confused than the last. She was young, looked healthy, her movement seemed good, and her blood tests were reassuring, so she was advised to try simple pain relief and see how things went.
Nothing seemed to explain why her body hurt every single day. Eventually, she stopped talking about it. She began wondering whether she was just being dramatic.
“Maybe everyone else has these aches and are coping better than me”.
Seeing us at Evolv
When Millie came to see us, she wasn't expecting any answers. In fact, she almost didn't book the appointment at all.
She'd spent years hearing things like, "You're too young to have back pain." Or, "Your blood tests are normal." She'd tried to explain that it wasn't just her back, it was her headaches, her aching joints, the constant need to stretch and click, the dizziness when she stood up, the tummy problems that seemed to come and go for no obvious reason. But because no one symptom seemed particularly unusual on its own, nobody had ever stepped back to look at the bigger picture. So that's exactly where we started.
Before we looked at her posture or tested her joints, we listened. We talked about her childhood, the growing pains that never really went away, how long she could comfortably sit before needing to move, what happened on a typical day and, most importantly, how all of this was affecting her life. She admitted she felt guilty for constantly changing position. Friends would joke that she could never sit still. Teachers had often mistaken her fidgeting for not paying attention. The truth was much simpler. She was uncomfortable.
During the examination, we noticed something that hadn't been picked up before. Millie wasn't just flexible. Many of her joints moved further than we'd normally expect. Her shoulders, elbows, fingers and knees all showed signs of increased mobility, and when we assessed her using the Beighton Score, she met the criteria for generalised joint hypermobility.
On its own, that finding didn't explain everything because lots of people are naturally flexible and never experience pain. But when we put that together with her history, the puzzle pieces started to fit.
The aches.
The headaches.
The constant muscle tension.
The feeling that she needed to click her joints.
The dizziness when she stood up.
The digestive symptoms.
The clumsiness.
The fatigue that never quite seemed to go away.
For the first time, Millie wasn't looking at a collection of unrelated problems. She was looking at one body, with one story.
So... what actually is hypermobility?
One of the first things we explained to Millie was that being hypermobile isn't an illness. It's simply the way some people's bodies are built.
In people with hypermobility, the ligaments and connective tissues that help support the joints are often a little more flexible. That extra movement can be useful. It's one of the reasons many dancers and gymnasts are naturally very flexible. The downside is that the muscles often have to work much harder to provide the stability that the ligaments aren't providing as efficiently.
Imagine spending your whole day balancing on a slightly wobbly step. You'd probably feel tired much sooner than someone standing on solid ground. Your muscles respond in much the same way. They work overtime to help your joints feel supported.
Over time, that extra effort can lead to aching muscles, fatigue and the feeling that your body never quite gets a chance to switch off.
For some people, hypermobility doesn't just affect the joints. Because connective tissue is found throughout the body, some people also experience symptoms such as dizziness when standing, digestive problems, headaches or fatigue. Researchers have also found that hypermobility is more common in people who are neurodivergent, although not everyone who is hypermobile is neurodivergent, and not everyone who is neurodivergent is hypermobile.
For Millie, these symptoms were all different pieces of the same puzzle.
Next steps for Millie
Her body was constantly trying to find stability, so that is on of the important parts of her journey.
Together, we built a rehabilitation programme around her, not just her joints. We started with gentle exercises to improve the strength and endurance of the muscles that support her spine and other joints. We looked at ways to spread activity throughout the day rather than pushing through until everything flared up. We talked about pacing, recovery, sleep and recognising when her body needed a little more support rather than seeing it as a sign she'd failed.
Perhaps the biggest change was emotional. Millie stopped blaming herself and stopped wondering whether she was lazy or weak or just imagining it. She finally understood that her body simply worked a little differently.
And once she understood that, she could start working with it instead of constantly fighting against it.
There are still days when her joints ache more than she'd like, and there are still times when she needs to slow down, pace herself or adapt what she's doing. But she no longer wakes up wondering what's wrong with her.
She knows why her body behaves the way it does.
And perhaps most importantly...
She knows she's not alone.
