Sources of information on fibromyalgia

We asked people if and how they got information about fibromyalgia. It was quite common for people to feel like they were just given a leaflet and sent away with not much else after they were diagnosed. Most people wanted more information than they were given and sought this out from a range of other sources such as the internet, books, online or face-face support groups and through talking to others. However, some people like Aleysha, Bette and Audra felt that talking to other people with fibromyalgia could sometimes be less helpful . Some people said they didn’t know how to find information and wanted more signposting.

Julie says she only got a leaflet and feels let down at the lack of information she got from her doctor. She wants more info on how to cope with the pain.

Age at interview 48

Age at diagnosis 45

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Several people said they regularly search the internet for information about how to cope and manage their symptoms and also to check for any new developments or treatments. Some people read about symptoms in magazines or books before they even knew they had fibromyalgia, recognising and relating to what was described. Quite a few mentioned looking at NHS or charity websites rather than others that might be less trustworthy. Martin said, ‘You get a lot of dodgy websites out there.’

Rachel feels that online forums have been really helpful for sharing tips about what to try. However, some of the American sites can suggest that there’s a cure when there’s not.

Age at interview 31

Age at diagnosis 29

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Karen looks at the source of the article and spelling/grammar to check to see whether in her opinion it’s trustworthy.

Age at interview 33

Age at diagnosis 30

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Aleysha did a lot of Internet researching of symptoms before and after a diagnosis this helped her to get diagnosis and helps her to know how to deal with the symptoms.

Age at interview 23

Age at diagnosis 22

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Helen recognised her symptoms in a magazine and realised she had fibromyalgia.

Age at interview 55

Age at diagnosis 35

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Catherine prefers NHS information and websites that don’t have too much jargon.

Age at interview 67

Age at diagnosis 64

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Although some people wanted to search for as much information as they could find, others talked about not wanting too much information, because it can be depressing or doesn’t really apply to you. Bette said she doesn’t want to be ‘bogged down with too much information.’

For Liz, knowing too much can be a bad thing and so she doesn’t constantly research.

Age at interview 66

Age at diagnosis 47

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Lynn-Ann thinks that too much information can make you feel worse.

Age at interview 53

Age at diagnosis 44

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