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.

Age at interview 53

Age at diagnosis 51

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So when I went to the hospital, I can’t even remember which clinic they sent me to. Anyway, I met a doctor, a lady. She asked me and she read about my symptoms where I’d been to see my doctor, and she sat me on the bed and she felt my ankles and my knees, and I think there was 20 different parts of my body, it was a kind of, [using finger] Does that hurt? Does that hurt? Does that hurt and honestly, within ten minutes, that’s what she said, You have fibromyalgia and asked me some questions about my lifestyle, which I’ve just said is really busy. Asked me to calm down my lifestyle, you know, take it easy a bit, take a step back and get other people to do this and other people to do that. And, yeah, that wasn’t where I want to be either. So it was a lot of[scratching head] it was a lot of poking and prodding, basically, to give me the answer of, That’s what you have, fibromyalgia

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Chris’s consultant said she thought he could have fibromyalgia and explained what it was.

Age at interview 58

Age at diagnosis 43

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Well, when I was diagnosed as I said, it was maybe around about 2005, approximately. It could be earlier or later, as I said, I’m not very great with dates. It was with the rheumatology clinic at the hospital I attend and they said that the consultant, in her opinion, she believed that I had fibromyalgia. And I asked her to explain what that is and shethe only way that she explained it to me was that, that if you peel back the wires on a, like an electrical piece of equipment, the wires are bare. And so round about your nerve ends, there is a covering of material that’s meant to protect these nerve ends from inflammation so fibromyalgia is basically the wires being exposed, and so when that’s exposed, then it feels the pain becomes more intense and more unbearable and very restrictive in what you do. So when I was told that, she gave me information on it, you know, she never left me just with those words, she gave me sort of various, various pamphlets and stuff that she had downloaded from the internet.

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In 2018, Aleysha went to her GP after looking into her symptoms. She asked whether she could have fibromyalgia, which her GP agreed was a possibility. Aleysha was referred to a rheumatologist who ruled out a series of other conditions before telling her that ‘it’s probably fibromyalgia.’

Aleysha was referred to a rheumatologist who ruled out a series of other conditions before telling her that it’s probably fibromyalgia.

Age at interview 23

Age at diagnosis 22

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So I went to my GP at some point in I think September of 2018 and I said to her, I have all of these problem, half of them I hadn’t even mentioned to her before because it didn’t occur to me that it was relevant, and I was just like, I’ve been looking into this and I think that there’s a chance that I either have fibromyalgia or chronic fatigue syndrome. I don’t know what you think, but these are the things that I like have researched, and these are the symptoms that I have. What is next And she was basically just like, Yep, I agre.

So at that point she said to me that like she wasn’t in a position to give that diagnosis and that it was something that had to be given by, somebody who had more knowledge about it. But she started to work with me then, in terms of getting all of the referrals done. So I was referred for rheumatology and to the pain clinic at that point.

So I eventually got an appointment with them in January of this year, so 2019, and I went to see the rheumatologist there and he again, asked me lots of questions, did a physical exam, and basically just said, Well it’s not rheumatoid arthritis, it’s not anything else that, like it’s not lupu, or at least we don’t think it’s lupus, my mum has lupus so we will see if that’s something that I develop at some point. But, basically he was just like, It doesn’t seem to be any of these other things that we’re concerned about, so it’s probably fibromyalgi, and he gave me a leaflet and was like, Off you g, that was it, which, I understand because fibromyalgia obviously doesn’t fall into the rheumatology bracket but it just has to be excluded.

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Morag said she finally got her diagnosis from a new GP who joined her local practice.

Age at interview 48

Age at diagnosis 46

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Then eventually I went, I got a new GP, well, I didn’t move GPs, a new GP started at the surgery and she kind ofshe totally understood where I was coming from, you know? And, I kept saying to her, I’m not – people think I’m depressed and I’m not I am, don’t get me wrong, I was grieving, but I’d been there, so I justI couldn’t get it out of my head. And it was just the fact that I had to keep repeating, repeating, repeating, but nobody sort of knew. And then she did, she said, I think you might haverdquo; well, she says, We’ll rule everything else out and if it’s not, it’s definitely fibromyalgia and at the same time I was going to the chest clinic and she, the consultant there, was of the same opinion. So that was the diagnosis.

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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.

Age at interview 24

Age at diagnosis 23

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So, I went back to the GP then and, he went through all the results and he just said, Well I’m going to have to refer you to, rheumatology because the you know, this is beyond what a GP can diagnos, he said you know, the x-rays have ruled out rheumatoid arthritis because there was no damage to my joints, they were all fine. He said it could be, lupus because my blood test for lupus had come back as a positive result, but he also said you know, Because you have other autoimmune conditions it could be that that’s your normal and not you’ve got lupu.

So he sent an urgent referral to rheumatology. I heard back from them within a couple of days and so then I’d got an appointment, I think it was two or three weeks later, which I thought was great you know, [laughs] it’s hard to get an appointment sometimes so I was very happy that it was that quick.

And then a week before the appointment, the original appointment, I got a letter to say that my appointment had been moved back by about three months, with no explanation as to why. So we, we rang, we tried to get hold of the consultant’s secretary or somebody in the department to just try and get an answer as to why it had been moved. We were then informed that, the consultant had looked at my notes and had decided that I didn’t need an urgent referral and therefore I could wait several months.

So we then went back to the GP and just said that, I don’t know why they’ve changed it, I don’t know why they feel they can change it without even having met [me and you know, Clearly this is urgent, I can’t do basic every day thing. And he then said you know, I’ll write to them again, I’ll do what I ca you know, he was great actually, really, really good I you know, I felt like he really listened and understood what was going on.

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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.

Age at interview 48

Age at diagnosis 45

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Well I went back to the GP, not straightaway, and kept complaining about my pain and she referred me to the rheumatology because just in case it was rheumatoid arthritis. So I went to rheumatology and had various tests done, and they said, Well you don’t have rheumatoid arthritis, you probably have fibromyalgia, here’s a leafle [laughs] We don’t need to see you again, goodby.

So when you think about that moment, so did she do, explain anything?

No, just gave me the leaflet.

Just the leaflet?

Yeah.

Do you remember what kind of leaflet that was?

It was an NHS leaflet about fibromyalgia, it was only, it wasn’t very big or anything, a couple of pages.

And as you just said, she said, I, there’s nothing else I can d
Mhm.

yeah, so no further explanation, or?

No.

No.

A leaflet. [Laughs]

Leaflet.

Have a leafle. [Laughs]

Yeah. Did she say so who is going to follow up or what’s going to happen next?

Well she sent me to the OT because I don’t sleep very well, and the OT, so my mum has Parkinson’s so I’m her main carer, so I talked about what I have to do in the day with my mum, with me teaching, and she said, No wonder you can’t slee [laughs] she says, it’s not the fibromyalgia, you’re just doing too muc [laughs] so that wasn’t really helpful either [laughs].

So what it the rheumatologist who referred you to OT?

I think so, I can’t quite remember, I think so.

So when, when you think about that moment, how did that make you feel when that rheumatologist said, There’s not much we can do, it’s probably fibromyalgia, here’s a leafle, how did
I was really annoyed, oh, I was just so, it just feels like I’ve spent, this has, this has been going on now since 2002, so that’s 17 years I’ve had fibromyalgia, and I’m still not getting any treatment for it that works. I don’t know if there is any treatment that works, and that’s problem because my doctor’s never told me, no-one’s ever explained fibromyalgia other than the leaflet, and I bought a book about it. But that doesn’t you know, you, it’s hard to, sometimes to get the information out a book and refer it to you because people’s symptoms differ. So yeah, annoying, very annoying.

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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.

Age at interview 65

Age at diagnosis 57

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I think that would have probably helped, just to say, Right, okay, this is what it is, this is what you’ll experience or whatever. But it was just – I’ll let you see afterwards what they printed out for me.

So that leaflet you were given when you read that through, what did you think about that?

Well, it was 2013 so it was quite a while ago. It wasn’t a leaflet, it was just something they printed off the internet. But it was half-printed on a sheet and half-printed on a prescription piece of paper. You know, I just think, Hmm, I’d be worth a little bit more than that but

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Michael thought that he should be given more resources and signposting when he was diagnosed.

Age at interview 63

Age at diagnosis 61

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Yeah, I mean, it’s not great, quite frankly. I think with hindsight, I should have been given much greater clarity and a much greater pack of resources, including some signposting. When I came out of that appointment with the rheumatologist, and of course it’s easy for me to think back and say, Well, I should have said X, Y and Z but you know, at the time you’re, you know, kind of knocked backed by what you’ve been told if it was unexpected and you’re just trying to come to terms with it. But yeah, that wasn’t very good. And by the way, something that is part of the inconsistency in healthcare these days, is whether a patient finds doctors, consultants, they’re supported by clinical nurse specialists.

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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.

Age at interview 31

Age at diagnosis 29

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So my GP was really good, actually. She was really understanding, she listened to everything and she said, Well, I don’t know whether you’ve heard of fibromyalgia but it sounds to me, given that you’ve had all of the tests and there’s nothing significantly wrong with you in terms of your sort of biological side of things, it might be that it’s fibromyalgia,’ but she said to me, she said, I can’t make the diagnosis so we need to refer you on to a rheumatologist.

So it was in March of 2019, I went to see a rheumatologist at the local hospital. And she again took a full case history, she looked at my sort of my medical records, asked me about my lifestyle, and then she did a test as well where she looked at all of my joints and my and sort of the pressure points as well on my back, so she had a feel of different areas on my upper back, my lower back and my wrists. And she noticed that there were certain trigger points that would make me almost flinch, and I wouldn’t say it was because it was an excruciating pain but it just felt really uncomfortable with her applying even the lightest of pressure.

And I was explaining to her as well that I got weird symptoms where I felt like, particularly my forearms, felt that they were on fire, or just that I’d got a really bad carpet burn or sunburn on my arms. You know, it was sort of ifif my husband would invite me in for a cuddle or something, I’d almost say, No, please don’t touch me, it’s really uncomfortable. So she sort of had a good feel through everything, felt my joints, and she said, Well, I don’t think there’s any form of arthritis that’s actually there, but it does suggest that yes, I think the diagnosis of fibromyalgia is what’s there.

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Liz described having a short consultation, but felt it was positive in terms of getting the information she needed.

Age at interview 66

Age at diagnosis 47

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As soon as I saw the specialist he told me I had a fibromyalgia from the way I was walking and moving and said that fibromyalgia was something that was caused perhaps by my 30 years of nursing and lifting wrongly. I reiterated that I felt that I’d never been off work except once with a bad back, but at least somebody had given me a diagnosis. He again recommended to stop the physio I was getting because it was obviously making me worse, but to keep myself mobile and to take anti-inflammatories and painkillers as necessary and to look it up and try and manage the condition myself as opposed to somebody else telling me what I should be doing.

So that was the one and only time I saw a specialist, because I did look it up on the internet and decided yes, the only way I could manage it, because by this time it was a year on and I felt really disabled, I hadn’t been able to work or anything. So I changed, because the night pain was so bad I changed the type of work I was doing and I decided to go into catering, so I did that. I still would have problems with lifting anything heavy, my arms would get sore and I would ache all over, sometimes I would have swelling in my hands, and the best cure for that was dipping them into freezing cold water and keeping them there.

So in essence I managed my condition.

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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.

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...