WHEN she was just 13, Bethan Bourne began showing fibromyalgia symptoms.
Now 32, and having lived with the condition since her early teens, the Wokingham resident has commented on a new landmark study that has for the first time identified the genetic risk factors of fibromyalgia.
Led by King’s College London, the research analysed data from over 2.5 million adults, of which, 55,000 had a fibromyalgia diagnosis.
And the results show the strongest genetic evidence yet that fibromyalgia is linked to the nervous system.
It causes symptoms that include: chronic pain, fatigue and memory loss, but it is often overlooked or misdiagnosed by medical professionals.
Many people living with the condition have told Arthritis UK that they struggle to have their experience of fibromyalgia validated.
This was true for Bethan.
She waited 10 years for her formal diagnosis, having been repeatedly told by healthcare professionals she was just experiencing ‘growing pains’.
She said: “The lack of diagnosis for years affected my mental health and made me feel like I was a fraud.
“I had to fight each doctor to be taken seriously or even to be listened to without it being dismissed as growing pains or just seeking attention.
“I kept quiet and carried on despite the pain which actually made things a lot worse.
“Rather than listening to my body, and telling people I needed to adapt to something, I adapted to them instead – overdoing it and causing huge flare ups.
“Having a better understanding of fibromyalgia would mean so much. At the moment, it is trial and error and just about managing symptoms rather than getting to the root of the problem. Finally feeling validated could improve the lives of millions living with the condition, as well as their families, friends and carers.”
Professor Lucy Donaldson, director of research at Arthritis UK, said: “People living with fibromyalgia can struggle to have their chronic pain recognised and validated, often due to ongoing uncertainty about its causes.
“By bringing together leading researchers from around the world, this landmark study provides the strongest genetic evidence yet that fibromyalgia is linked to changes in the nervous system.
“It offers millions of people a clearer understanding of its biology and what may be driving their condition and importantly, helps validate their experiences.
“There is still much to learn about fibromyalgia, and more work is needed to improve diagnosis, treatment and support.
“But this research is a significant step forward, laying the groundwork for future studies that could ultimately improve the lives of millions of people living with this debilitating and misunderstood condition.”
For information, visit: arthritis-uk.org and nhs.uk
