What is fibromyalgia?

Fibromyalgia is a common condition affecting around 1 in 50 people. It causes widespread chronic pain, and can include, for example, extreme tiredness, marked sleep disturbance, memory problems and tenderness to touch, as well as gastric problems. Diagnosis and management is complex. There are no laboratory or imaging tests which allow a definitive diagnosis to be made. Some people can wait up to ten years for a diagnosis, involving many GP consultations and referral to a number to different specialists. The persistent pain and other symptoms associated with fibromyalgia can have a major impact, affecting daily activities and particularly the ability to remain working.

How the people we spoke to described what it’s like to have fibromyalgia

We asked people with fibromyalgia to describe what it’s like to have the condition. Aleysha describes how it ‘hurts all the time everywhere’ and both Aleysha and Kristie talk about the unpredictable nature of the condition ‘your body is essentially unreliable.’

Aleysha talks about the unpredictable nature of fibromyalgia.

Age at interview 23

Age at diagnosis 22

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For Kristie, living with fibromyalgia is different from day to day it can be sneaky.

Age at interview 32

Age at diagnosis 32

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Lyn can’t tell from one day to the next what she’ll feel like and sometimes has to take days off work to recharge her batteries.

Age at interview 68

Age at diagnosis 50

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Helen also says that fibromyalgia can be invisible to others ‘a lot of it is very hidden’ and only you know what you’re feeling. Others also referred to the invisible nature of the condition, with Bette saying that it’s ‘like one of the worst conditions you could ever have while looking okay. You can look fine and people constantly say, ‘You look great’, and you feel awful. That’s the worst thing about it.’

Helen says that a problem with fibromyalgia is that it’s often invisible to others.

Age at interview 55

Age at diagnosis 35

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Several people we spoke with described having fibromyalgia as being ‘incredibly frustrating’ ‘exhausting’ and ‘limiting’ and Lyn says that it ‘makes you feel like a second class citizen receiving very little help.’ When asked, Chris described having fibromyalgia as ‘Heartache. Fibromyalgia, I could only say is heartache’ and Jacqueline called it ‘a living hell.’ Debbie summed up fibromyalgia as ‘a lifelong, chronic, debilitating, exhausting disease that pretty much just takes over your life.’

Mary says fibromyalgia is horrible and that every day is a struggle. When she uses her crutches she feels people are more sympathetic as they can see that something’s wrong.

Age at interview 59

Age at diagnosis 43

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Although describing the negative impact that fibromyalgia can have, some of the people we spoke with also pointed out that it doesn’t rule their lives and that for them, it can be manageable. Liz says she doesn’t think about fibromyalgia every day, ‘it’s not my entire life, it’s part of it, but I just get on with it.’ For Rachel, fibromyalgia is ‘not unmanageable’ and Alexis says that ‘,it makes you appreciate life so much more.’ Martina recognises the challenges of fibromyalgia but says it can be rewarding, ‘For me personally, it’s been rewarding in some aspects.’

Rosie describes how she can manage and control some of her fibromyalgia symptoms by trying to let go of stress.

Age at interview 54

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In this section you can find out about the experience of having fibromyalgia, by listening to people share their personal stories on film. Our researchers...

Early symptoms of fibromyalgia

People talked about the early symptoms they experienced in the past before they knew they had fibromyalgia; for some it was a sudden onset, whereas...