Hypermobility - the little-known 'bendy disease' that causes pain and fatigue

Vivienne Duval has always been flexible. She can do every yoga pose there is, but it was not until she turned 58 that she realised that this bendiness was not a good thing.

In fact, it was the answer to all of the strange health problems she had been experiencing for years - issues with digestion, fatigue, and pain.

Earlier this year, when Vivienne came across a video on social media explaining the symptoms of Hypermobility Spectrum Disorder, it was like a light bulb switching on.

"I saw myself in everything they were saying," she tells me. "So I armed myself with all the information and went to my doctor."

Vivienne's hunch was confirmed - she had hypermobile joints. "I had all these separate things, but no one had ever put them all together. Now it's blindingly obvious."

The disorder may affect hundreds of thousands of people in the UK, but many - like Vivienne - face significant delays in getting a diagnosis.

Hypermobility Spectrum Disorders (HSD) are connective tissue disorders that cause joint hypermobility - when joints have a greater-than-normal range of motion.

Due to lax collagen between connective tissues, muscles have to work harder to keep joints stable, leading to fatigue and pain, as well as clumsiness.

HSD can also cause gastrointestinal symptoms because the connective tissue within the digestive system is stretchier.

Links between HSD and neurodiversity such as autism and ADHD have also been established.

Some people, like Vivienne, also have hypermobile Ehlers-Danlos Syndrome (hEDS), which is diagnosed by looking for hypermobility and faulty connective tissue throughout the body, as well as musculoskeletal issues like dislocations.

Hypermobility disorders may affect hundreds of thousands of people in the UK, though many remain undiagnosed, according to new research, external from the University of Edinburgh.

It found patients with hEDS and HSD in the UK waited an average of 19 to 21.7 years for diagnosis.

The diagnostic process for HSD is complicated by the fact the National Institute for Health and Care Excellence does not have a dedicated, standalone clinical guideline for diagnosis.

Dr Jessica Eccles, a researcher on brain-body interactions and hypermobility, says diagnosis can be a "postcode lottery in terms of where you are and what opportunities are available to you for assessment".

She adds that HSD and hEDS seem to affect women more. "We know that women's health is not necessarily as well-researched as problems affecting men."

The research found that under a third of those diagnosed said their GP had initiated management for the disorder, and only 13% had access to a "knowledgeable clinician".

This leaves some people feeling as though they have nowhere to go, says Dr Stephanie Barrett, a consultant physician and rheumatologist.

She says "time and time again" she sees people in her clinic who cannot work because of "severe brain fog" linked to hypermobility.

Vivienne is among those feeling unsupported. "I need to be able to help myself and I don't know where to go. I'm finding out about this condition on social media."

Vivienne's mix of frustration and relief over her diagnosis is a reaction I can relate to.

I was diagnosed with HSD earlier this year, and know I am fortunate to have made this discovery at 24 years old, and not years later, like many sufferers.

Vivienne and I both experience joint pain, fatigue, and digestive issues. Growing up, I always thought I was carrying around myriad health problems, but this year, I discovered they were all connected to my bendy joints.

After speaking with my consultant, I found my clumsiness was connected to HSD, that it wasn't normal to wake up every morning already feeling tired, and that, unlike me, most people do not experience pain when standing in a queue or on the train.

Luke Grindlay, 23, was diagnosed with HSD in primary school when teachers noticed he struggled to use pens and cutlery.

He hasn't sought treatment, which he says is probably down to "imposter syndrome", fuelled by a lack of information on HSD.

"If you go online to research this, there's nothing there… I'm going through a lot of pain, but because I can't find anything about it, it's almost like I'm making too much of it."

The unpredictable nature of how HSD can impact me means I relate to this idea of imposter syndrome. Sometimes I can run long distances without too much pain, while other times a shopping trip can tire me out.

Luke works in golf and his role can require a lot of waiting around on courses, which can be painful. However, he says: "It's hard for me to tell people, because not many people know about the condition."

Luke finds the impacts hitting "harder" as he gets older.

Vivienne says her social life and work has been impacted. "I used to work as a massage therapist in work places, but I couldn't stand for long and I would get really tired."

She changed job, and now works as a massage therapist for people living with dementia, which is less physically demanding.

Research suggests HSD symptoms can worsen, or come to light, after a stressor, Dr Eccles says. This might be puberty or menopause, and some papers suggest a link to Covid.

This means someone could go through much of life with flexible joints, but an "external environmental stressor" could come along, worsening everything.

There are ways to treat HSD, Dr Eccles says, but no "single magic bullet". Physiotherapy can be useful, while others may benefit from gentle exercise like swimming.

Dr Barrett explains that physiotherapy can help by "toning up and strengthening the key muscles which hold the skeleton together".

However, she feels the tendency to tell sufferers to "just do a bit of physio" and get on with life is unhelpful. Ultimately, she says more attention needs to be given to HSD and hEDS.

"It takes people working together and sharing ideas, and for the government to recognise this, to tackle this."