What is the background to this study?
Fibromyalgia is the name given to a group of symptoms that often occur together. These symptoms include long-term pain all over the body, fatigue, and poor sleep. There is no blood test or scan for fibromyalgia. Doctors make the diagnosis by recognising the pattern of symptoms, guided by criteria. Research suggests these criteria are not applied consistently. People may have to wait years for a diagnosis.
What did we want to find out?
How many people who meet the criteria for fibromyalgia have a diagnosis. Whether particular groups of people are more likely to not have a diagnosis.
What did we do?
We used data from UK Biobank, a large study of health in the UK population. Of 167,099 people who completed a pain questionnaire, 4,197 met criteria for fibromyalgia. We checked health records and questionnaire answers to see who had a diagnosis. We then compared those with or without a diagnosis across 27 characteristics.
What did we find?
Almost three in four people meeting the criteria (72.6%) had not received a diagnosis. Men, older people, and people with milder symptoms, shorter-lasting pain or less fatigue were less likely to have a diagnosis. People with nerve damage (neuropathy) were also less likely to have a diagnosis. Those with chronic fatigue syndrome or complex regional pain syndrome were more likely to have one.
Why does this matter?
These patterns suggest doctors' decisions may be influenced more by the stereotype of fibromyalgia as a condition affecting younger women with more symptoms than by the formal criteria. Without a diagnosis, people can miss out on appropriate treatment and support. Better awareness and training could help make diagnosis more timely and fair.
Who authored this study?
This work was authored by Dr Sung-A Kim, a visiting researcher with the Epidemiology Group from Kyung Hee University in Seoul, with Professor Gary Macfarlane and Dr Marcus Beasley of the University of Aberdeen.
Who funded this work?
The work was carried out as part of the PACFiND programme, funded by Arthritis UK. Sung-A Kim's work was funded by the BK21 FOUR programme of the Graduate School, Kyung Hee University.
Where can I read more?
The full paper, 'Factors Associated with Fibromyalgia Diagnosis amongst People Meeting Criteria: Results from UK Biobank', is published in Arthritis Care & Research here.