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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I think there’s a couple of different ways that I could describe it succinctly. The first would be everything hurts all the time everywhere, and everything hurts more than it should.

The other way in terms of some kind of metaphor , it’s like if you, when you wake up in the morning and you, I don’t know, you go to, I don’t know, you pick up a piece of wood that you need to sit on, like that’s going to be your chair for the day. And some days it’s going to be strong and you’ll be fine, and then other days you sit on it and it breaks, and you, you don’t trust that it’s ever going to be reliable. And then some days it’ll start out fine and then it’ll break.

So your body essentially is just unreliable and you can’t trust anything, and then you, it makes you question yourself. I’m not sure, I feel like there are so many other ways. There’s the spoon theory but like everybody knows that. I don’t really agree with spoons, I think it should be something else [laughs].How else would I describe it? it’s just like
it’s all right
I would say that it’s like every day being your worst day until it gets worse. Like you just feel horrible all the time but then you deal with it I guess. I don’t know, it’s so complicated [laughs].

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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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Yes, it’s, what’s the word that I’m looking for? Living with fibromyalgia is different from day to day, it surprises you in that one day you might feel normal and then the next day or three or five days you feel awful. So it’s, it really creeps up on you, and you know, one day you could be feeling great and then it hits you like when you’re washing up [laughs] and it just yeah, you just have a horrible flare. So, yeah, it’s sneaky, fibromyalgia.

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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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The headmistress at the school knows I’ve got it because sometimes if I get a fibro flare then I have to take one or two days off to completely recharge the batteries. But, otherwise it’s never spoken about, it’s, I don’t think they know what to ask, and, so it just doesn’t get spoken about.

And when you need you know, those one or two days off to just you know, look after yourself, is that, accepted or how do they deal with that?

They get somebody else to do the job, much to the kids’ disgust [laughs] Where you been Lyn [laughs] yeah. And I, generally if I have to do that I just completely sleep that two days, or day and a half anyway, it’s just complete and utter exhaustion, it takes the feet from you I’m afraid.

But it’s usually just complete exhaustion, on the sofa, fleece over the top of me and out for the count until I’ve recharged the batteries. But touch wood it’s not often that that happens, but it does happen.

And you can’t, you can’t tell from one day to the other what you’re going to feel like because they’re all different. I mean I could get a whole week’s, a good week and then you could get a fortnight of being miserable, it’s swings and roundabouts and you can’t foretell which way it’s going to go, which is the annoying thing.

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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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Can you summarise in one sentence what it’s like to live with fibromyalgia?

How about one word?

it’s okay.

Rubbish [laughs].

Other people they say, Can I use one word you can.

[laughs] It changes your life completely. I guess again, you’ve listened to a lot of people, and they’ve told you different stories and, if I was sitting in your seat listening to me I would probably get a different impression just listening to me than I know being in my body, if you know what I mean.

And I guess I’ve you know, talked for a while and given you hopefully fairly coherent answers, but I know that you know, for another large percentage of my day or time that things can be quite different, and it’s easy to again, judge people from the outside and think, Well gosh, well she seemed okay, what’s the problem you know.

But people do have significant problems, and I think the problem with fibromyalgia is that a lot of it is very hidden and they look fine and at times, and it can appear very fine, but a lot of the time they actually aren’t for different reasons. So it’s very difficult to get that across to people and be believed.

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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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No, no they don’t they you know, you do things, subconsciously you know, all day you have you know, these thought processes in your head like you know, you get up in the morning and you have a shower and you brush your teeth and you put your clothes on. Some days to me it would be easier for me to clean your oven with a toothbrush because that’s how overwhelming it makes you feel.

it’s just horrible, it is horrible, and you just struggle every day, and people are only sympathetic for some of the time because you know, friends that maybe pop in will say, But you don’t look sic, you know, because you function, maybe not to the best that you have functioned before, but you don’t look sick. Yeah, some days you look bloody awful, and there are days that I look as though I’ve been dragged through a hedge backwards, but it’s just I don’t have the energy, I don’t have the wherewithal to do it. It is a constant battle, emotionally, physically; it’s awful.

When my back is really bad I use crutches and I think I get more sympathy if that’s the right way to explain it, because, Well she’s using crutches, there must be something wrong with he, you know.

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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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Yeah, my headaches in the last year, that’s the biggest change. The biggest change. My chest pain as well flares up when I am stressed and it just kind of holds me and keeps me almost paralysed and I can’t open my chest out, it’s just like everything constricts. But the calmer I am and the less stressed, the better all these things are.

it’s like I hold the tension and then it translates into pain and then it translates into almost chronic pain. I can’t seem to let it go, but if I let it go here, mentally and emotionally, I can almost control it. I have slight Raynaud’s and, like, if I’m upset or angry or sad or whatever, I get pins and needles in my hands. So that’s quite new, that’s the last few years, three or four years, it’s almost like my body is trying to tell me something. Once I kind of work it out and go, You’re not going to do that it’ll move somewhere else.

No, I think that once I mentally understand where they came from and what they’re doing, they quite often stop, but maybe rise somewhere else, so the pattern would be that they move, but they dissipate, they get less. And I think that quite a few symptoms have actually stopped waving at me, deal with me, this is what it is, because I know now, I know to search them out and maybe to find why and deal with it then myself.

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