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...
Getting a diagnosis of fibromyalgia
Diagnosing fibromyalgia can sometimes be difficult as symptoms can vary from person to person. Symptoms can also be similar to those of other conditions. Healthcare professionals look for a number of common symptoms such as widespread pain and fatigue (see What is fibromyalgia?) to help them make a diagnosis of fibromyalgia. In the past, a count of specific ‘tender points’ throughout the body was commonly used to make a diagnosis, and many of our participants described being diagnosed that way. Nowadays, as fibromyalgia is recognised as a condition with many other symptoms in addition to pain, a tender point assessment is not needed to make a diagnosis.
There are no specific blood tests or scans to confirm a diagnosis of fibromyalgia. But sometimes tests are done to check there are no additional health problems that may be causing symptoms. It is possible to have other health conditions, such as rheumatoid arthritis or an underactive thyroid, as well as fibromyalgia. Some people can wait years for a diagnosis, involving many GP consultations and referral to a number to different specialists.
This was reflected in the stories people told us about their pathway to diagnosis. A common feature was that it often took several years and numerous visits to the GP with a series of unexplained symptoms before getting a diagnosis. Other conditions such as hypermobile joints, asthma, menopause, depression and rheumatoid arthritis were initially thought to be the cause in several cases. Often, people described that a diagnosis of fibromyalgia was made after other diagnoses had been ‘ruled out.’ Bette said it felt like people thought she was just ‘a fat, lazy hypochondriac’.
Sometimes the diagnosis was made by a GP, but more commonly after referral to a specialist like a rheumatologist. Sometimes blood tests were done to rule out other conditions, like for example rheumatoid arthritis and sometimes a doctor performed a tender point assessment as part of the diagnostic process.
Audra describes the tender point’ assessment that she got which helped her doctor to diagnose fibromyalgia.
Chris’s consultant said she thought he could have fibromyalgia and explained what it was.
In 2018, Sonia went to her GP after looking into her symptoms. She asked whether she could have fibromyalgia, which her GP agreed was a possibility. Sonia was referred to a rheumatologist who ruled out a series of other conditions before telling her that ‘it’s probably fibromyalgia.’
Sonia was referred to a rheumatologist who ruled out a series of other conditions before telling her that it’s probably fibromyalgia.
Morag said she finally got her diagnosis from a new GP who joined her local practice.
There were some examples where people felt they had been diagnosed relatively quickly. Alexis was pleased to get a specialist appointment really quickly, but was upset it was then delayed because the specialist thought she wasn’t urgent enough. Her GP managed to get the appointment reinstated.
Alexis was pleased to get a specialist appointment really quickly, but was upset it was then delayed because the specialist thought she wasn’t urgent enough.
As was the case with many other people we spoke to, it was several years before Julie was diagnosed with fibromyalgia. She was eventually referred by her GP to rheumatology to rule out rheumatoid arthritis. She said she was simply told she had fibromyalgia, given a leaflet and ‘We don’t need to see you again, goodbye.’ She said it felt like ‘a throwaway diagnosis’, and Chrissie described it as ‘a diagnosis to shut you up’.
Julie was annoyed that when she was diagnosed with fibromyalgia she was just given a leaflet and sent away.
Some other people we spoke to also said they experienced a lack of information and support immediately after they got their diagnosis. Mostly people recalled being given painkillers and/or information sheets, but little in the way of follow up, signposting to support groups or mental health services. When she was first diagnosed, Kath was given a leaflet half printed on a sheet of paper and half printed on her prescription note. She describes how this communicated to her at the time what she felt was a lack of care. ‘I just think,I’d be worth a little more than that’.
When Kath was first diagnosed she describes being given a leaflet half printed on a sheet of paper and half printed on her prescription note.
Michael thought that he should be given more resources and signposting when he was diagnosed.
Several people talked about feeling rushed and not having enough time to talk it through and think what questions they needed to ask. But Rachel was really pleased that her GP was very supportive and thorough, even though she would have liked to have a longer discussion with the rheumatologist about how to manage the impact of the condition. Liz also described a short consultation, but felt it was positive in terms of getting the information she needed to help manage the condition.
Rachel was really pleased that her GP was very supportive and thorough.
Liz described having a short consultation, but felt it was positive in terms of getting the information she needed.
The people we spoke to experienced a range of emotions when they were first diagnosed with fibromyalgia, including shock and sadness. But given the long pathway to diagnosis, a sense of relief was also common – relief that finally they could name the condition and were reassured that someone believed them and they weren’t imagining it.
Feelings about getting a diagnosis of fibromyalgia
We asked people to describe how they got their diagnosis of fibromyalgia. When describing how they got their diagnosis, many also discussed how they felt...