Julie
Julie started experiencing extreme pain at 31. Many years later, after several referrals she was diagnosed with fibromyalgia at 45/46. Although she takes various medications, she is very frustrated as she still experiences extreme pain after 17 years.
Julie is 48, single, and has long-standing disabilities. She teaches music part-time. Ethnicity: White English
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Julie started experiencing extreme pain all over her body in 2002 after recovering from a burn incident. She also experiences “brain fog”, fatigue, sleep problems and additional mental health problems. When she initially got referred to the pain clinic by her GP, they told her that nothing was wrong and that the pain was just her imagination. Julie wonders whether her additional mental health problems make it more likely that the health professionals she saw did not believe her. A couple of years later, after a check-up relating to some breathing issues, Julie was referred to neurology and for a period of four or five years underwent various tests to try to establish what was causing her ongoing pain. Nothing was established and she felt that one of the neurology doctors had been dismissive of her. After another eight to nine years, she was referred to rheumatology and finally diagnosed with fibromyalgia. After she was told that she likely had fibromyalgia she was annoyed that she was only given an NHS leaflet and told that they did not need to see her again.
Currently, although she takes various medications, Julie is very frustrated to still experience extreme pain after 17 years and being told by doctors that there is nothing more they can do to help her. Julie feels very annoyed as she thinks that fibromyalgia is treated like “a throwaway diagnosis” and is not perceived as “a proper” or “real” condition. In comparison, she explained that people with other conditions get more advice and support. She thinks that a home visit by a dedicated fibromyalgia related nurse every six months would be of great support.
Julie’s family don’t really discuss health matters, but she talks to her mother for support and feels that this helps her to cope. She once engaged in an American online support group but didn’t find it useful. She’s not sure if a fibromyalgia charity exists and she’s currently not in contact with other people who have fibromyalgia. Julie would be interested in attending a face-to face support group if one was available.
Julie had to give up classroom teaching and works now as a part-time music teacher from home. She really enjoys working with children. Her job helps her to keep going though sometimes she needs to cancel classes because of her fibromyalgia. Julie’s advice to other people affected by fibromyalgia is to talk to others and ask for support.
Julie was annoyed that when she was diagnosed with fibromyalgia she was just given a leaflet and sent away.
Julie was annoyed that when she was diagnosed with fibromyalgia she was just given a leaflet and sent away.
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 leaflet” [laughs] “We don’t need to see you again, goodbye”.
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 do” …
Mhm.
… yeah, so no further explanation, or?
No.
No.
A leaflet. [Laughs]
Leaflet.
“Have a leaflet”. [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 sleep” [laughs] she says, “It’s not the fibromyalgia, you’re just doing too much” [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 leaflet”, 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.
Julie takes anti-depressants amitriptyline and duloxetine for pain, but is not sure if it’s helping or not.
Julie takes anti-depressants amitriptyline and duloxetine for pain, but is not sure if it’s helping or not.
I mean I’ve, I’m on duloxetine and amitriptyline and something else for pain, what else for pain? I can’t remember what it is, something else anyway.
That’s alright.
But they don’t really do anything. Well they might, I mean the thing with tablets is you don’t actually know because if you weren’t taking them you might be in more, you might, your pain’s, when pain can vary you cannot tell if, really if the medicine is effective because you’re still in a lot of pain, so you don’t know if you would be worse if you hadn’t taken the medicine or it would’ve made no difference, it’s weird, I don’t know.
How does it make you feel if you know, like it sounds like a trial and error kind of thing and you’re not really sure as you say, is it the medicine or not, how, how do you feel about this?
I just get really irritated with it all. I go and see the doctor and they say, “Oh, you’ve had everything, you’ve tried everything, there’s nothing you can do, we don’t want to put you on opioids”, and I don’t want to go on opioids, I’m quite happy about that. But it’s just, it’s just frustrating because it seems that no-one can do anything about it. And you know, it’s a very common condition, one in, I think was it one in 25 people get it, four in a hundred. So it’s quite a common condition and you think they would’ve worked something out by now that would help, but obviously not [laughs].
Julie describes her pain as like being somewhere between a “dull ache” and “severe pain.”
Julie describes her pain as like being somewhere between a “dull ache” and “severe pain.”
I mean 100% day and night I’m in pain. I also have severe arthritis in my knees and my hips, so that doesn’t help, so from, and if I’m out my fibromyalgia affects my right side mainly, but sometimes my left side gets it. But my right side is a lot worse than my left side. And it’s like a nagging, I dunno what it’s like, it’s not a dull ache, it’s more than a dull ache, but it’s not a severe pain because obviously I’d be screaming if it was, it’s somewhere in the middle but I don’t know where.
I get fatigue, but I don’t know, I don’t sleep very well because of the pain, so I don’t know if the fatigue’s just because of the pain or the fatigue is an extra added, you know what I mean? It could be either.
Julie says she had to buy her own walker and didn’t feel like she got any help – “I’ve got fibromyalgia and no-one gives a damn.”
Julie says she had to buy her own walker and didn’t feel like she got any help – “I’ve got fibromyalgia and no-one gives a damn.”
Well I’ve had to buy my own walker, which I don’t know if it’s the fibromyalgia or the knees that make me not be able to walk very far, but anyway, I don’t, can’t. So, I mean I bought a nicer one that the one you would get on the NHS, but it’s just annoying that, like my mum, she’s had everything you know, wheelchairs, walkers, everything, rails everywhere you know, it’s all, “Yeah, yeah”, but I’ve got fibromyalgia and no-one gives a damn. I can’t you know, oh, it’s just so annoying.
So getting some kind of, physical aids …
Yeah.
… would be something you know, which can help people with fibromyalgia. So how did you get about the walker, how did you find out you can, who helped you with that?
Well I’ve never been referred to anyone for it. I mean I bought, I bought it, I’ve got, I’ve just bought another one because the first one broke, I bought it about four years ago yeah. I mean I talk to my doctor, I said, “I can’t walk, can’t do this, can’t do that”, she doesn’t say, “Oh, you need help, we’ll find someone to help you”, you know, it’s like oh.
Julie had to give up classroom teaching and works now as a part-time music teacher from home. She says she “couldn’t go by without the pupils”
Julie had to give up classroom teaching and works now as a part-time music teacher from home. She says she “couldn’t go by without the pupils”
I work part time, so I have, I have pupils come to the house for music, so I do that, which helps.
It’s hard, it’s very, very hard. I suffer with depression and anxiety as well as everything else that’s wrong with me, and you know, at times I just want to end it all because I’m in so much sodding pain and it’s oh, it’s very annoying and frustrating, and sometimes I just feel I can’t cope. I cancel pupils quite often, which is bad, I know it’s bad but I do, and it’s hard but that does help me doing stuff, even, I’m a bit agoraphobic, so I don’t go out much, I mainly stay in the house, so do you know …
So by people coming in is that a way to keep that social contact?
Yeah.
Yeah, because if you feel not really you know, ready to go out it is that contact …
Yeah, yeah. I couldn’t, I couldn’t go by without the pupils, I really enjoy working with children, so.
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.
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.
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.
I did a, a fibro, a fibro something, fibro net was it? You know, an American thing I think it was, support group but that was crap, really, really crap, so I don’t do that anymore. But I didn’t know where else to find anything so I’ve not done anything else.
So what kind of information do you think is really important to know or, at different time points as well, so at the diagnosis you just got a leaflet, but it’s still now after 17 years you would still like to get information?
Yes.
Yeah, what kind of information would be important for you at the moment?
How to cope with pain.
Julie feels that a once a month clinic for people would be helpful. She feels that people with fibromyalgia are treated less well than people with other conditions like cancer.
Julie feels that a once a month clinic for people would be helpful. She feels that people with fibromyalgia are treated less well than people with other conditions like cancer.
Well I think when you give someone a diagnosis you should go through, yeah, leaflets are helpful, but you should go through the leaflet with the patient and explain it, and explain the treatment, the medication, anything else that might help like diet, exercise, you name it, but they don’t.
And how does that make you feel not getting that kind of support?
Well it’s irritating and, and I think it’s, I think it’s absolutely awful that they don’t do that. I mean if I was going to the hospital, well I don’t know, I haven’t had much help with my knees either, if I was going to the hospital say with cancer, they would help you, they would give you lots of advice, you’d get support, it would be wonderful, well obviously not, yeah, not, cancer’s not wonderful. But the treatment is like miles, miles, miles better. It’s just like fibromyalgia isn’t accepted as a proper condition you know, people who, you say, “Fibromyalgia” they go, “Yeah” they think it’s more of a mental condition and it’s, you’re imagining the pain you know, and it’s not really there.
I would prefer to go to a group where you can see people. You can’t converse properly on a computer you know, you get, because you just don’t. So I would prefer to be where there, where there’s real people.
So is there something like here close by do you know?
I’ve no idea.
But that would be something you know, if it’s like a meeting, was as you say, a real meeting that’s where, what you know, you would like to have, this personal exchange?
It, it would be really good like if it was like a thing that was like once a month or once every two months or something, and you had a doctor there, a physio there, an OT there, a nurse there and then you had a group of people with fibromyalgia and you could ask questions first of all and the medics would answer your questions. Then you could go into groups and talk to each other about how it affects you and they could give you things to think about, something like that would be really good.