Fibromyalgia

So I got my diagnosis in April 2016, through a rheumatologist, and I was obviously relieved that there was something there, and I wasn’t going absolutely mad. Then I was referred back to my GP and from that point that was it, they kind of said, “It’s this, off you go”, which obviously is a shame but it was just a massive relief off my shoulders having a name, and I’d sort of been reading up on a lot of different things just to kind of rule out what I think it could possibly be and what I think it’s not, so I’ll go to the GP and sort of discuss through them saying, “This is what I’ve researched, I have a feeling it could be this”.

And since then, well I had the symptoms well before that but, now it was nice to put a name to it because when I first started getting pains, I know osteoporosis is a, like a, it’s like a pain free condition, I just assumed, “Oh, it must be something to do with the osteoporosis”, not realising you know, there’s other things going on. But it did take, many years back and forward, back and forward to rheumatology before I actually got the diagnosis of the fibromyalgia, and it was nice to put a name to what my symptoms were, because I actually began to think I was imagining it, began to think you know, describe this you know, and you’ve got all things in your head thinking, “Is it this, is it that? Is it bone cancer all the pains?” and then to get that diagnosis confirmed, it did help.

Yeah, okay, it’s just, it’s hard to describe it really, it is hard to describe because you live with it every day, you do live with this condition every day, and. But it was a relief to get the diagnosis knowing it wasn’t something sinister, because things do go in your head thinking, “Is it bone cancer, is it you know, is it something like that?” but it was nice to get a diagnosis to know you know, that it was something manageable.

Yeah, I kept telling them about this pain, and obviously the osteoporosis is a silent condition, but I, being a lay person not knowing medically, I thought, “Well it must be, my pain in my joints in my knees and my elbows must be coming from”, and he went, “No, osteoporosis won’t cause that”, and that’s when he started to looking into other things. And he did like, he’d lift my knees up and do like, move my joints and things like that, and the more I was describing where the pain was situated, where I was getting the most pain, and because it was, I had, the points in my, like my neck, my shoulders, down, right down to my toes, and of course I had all the different points, and they ruled everything else out and then real, and that’s when I was diagnosed with fibromyalgia because they rule everything else out first before they you know, and that’s what they, diagnosed me with.

But it’s because I was, whatever points, you have so many points in your body before they diagnose you with the fibromyalgia, but it did take, it did take a while for that diagnosis.

So, is it correct then that a rheumatologist diagnosed …

Yes, yes.

Do you remember what the rheumatologist you know, told you, you know, so you were in that appointment, you got the diagnosis, how did that work?

Basically said to me, “Nothing to do with your osteoporosis, this is your diagnosis”, and handed me a booklet with fibromyalgia and he said, “This is what it is”, and explained that “It’s an all over pain condition, it’s a debilitating pain condition and because there’s certain points in your body, that’s how we can diagnose you with this”, and explained all the other symptoms like the chronic fatigue, you do get the, like, see what I’m saying, forget you know, the words of fibro fog as you call it and the concentration, and obviously pain is debilitating. And I got a wee booklet explaining things about it and that was, that was his, that was it.

So how did you feel about then getting this diagnosis?

I felt relieved to know it event, there’s a name to it, because people can’t see pain or describing this pain and I’m not a person that moans and groans about it, I just get on with it. But it’s hard to describe pain, it really is hard to describe pain, and you’re saying, I started imagining in you know, “Is, is it in my head?” all this coming from my shoulders down to my toes, to describe that, “Oh, what’s she moaning about?” because you can’t sort of have pain every certain bit of your body but you do.

So it’s a relief to understand that, to get that diagnosis it was like, putting a label on it, to understand it and knowing that you had this condition and it wasn’t in my mind, it wasn’t that I was imagining it.

And then she sort of discussed saying that “Obviously everybody’s case is different but it sounds like it’s fibromyalgia”, and so I had, because I was unsure, I was like, “So are you diagnosing me with fibromyalgia?” and she was like, “Yes”, I was like, “Okay, cool, because like I want to be clear”, because when sometimes they say, “Oh, it could be this”, it’s often brushed aside. So because of doctors’ appointments in the past where they’ve been a little bit like blasé about stuff I kind of had to be like, “Right, is it definitely this?”, so she said, “Yes”, and then I got a bit teary eyed obviously out of the big relief for the fact that finally there’s, there’s a diagnosis and now it means I can be transferred to the pain clinic because all this time that I’ve been dealing with pain, because there’s been no diagnosis for it I wasn’t able to be referred to the pain clinic, but then it was like a two/three month wait for the pain clinic anyway yeah.

Yeah, so I sort of sat down, she sort of said, “I’m really sorry, it’s, it’s difficult to, to take the news”, and I was like, “No, no”, I was like, “These are, these are my relieved tears, they’re not sad tears, and obviously I’ll deal with the knowledge of having something later, but in this moment I’m just relieved”. And, so that was that and I went on me merry way.

So I’m still open to it being something else, but for now, given what we know about fibromyalgia and what I know about like my different symptoms, it seems likely that it is fibromyalgia, but I don’t think anybody’s 100%, and given that there’s no test, we don’t really know what causes it, it’s basically just a group of symptoms that you might have or might not.

Like we’ll see where it goes. Hopefully they’ll find out more, and it might end up being something completely different, but because I’m treating the individual symptoms, it doesn’t matter to me hugely exactly what it is, although it has been really helpful to get a diagnosis, because it means that like saying to somebody like, “I can’t work because my back is sore”, is different to me saying, “I can’t work because I have fibromyalgia”, because people actually recognise it as a disability, well for the most part, the people that think it exists. Those that don’t think it exists are also people that don’t think back pain exists, so it’s kind of the same problem.

But no, having a diagnosis has definitely made it easier, it means that like I can go and I can like get a sick note from my GP and like give it to, the Department of Work and Pensions and say, “I have this disability, I can’t work because of that”. And that made it a lot easier for me to receive the, the part of universal credit for, the limited capability for work and work related activities, which I had to go to an assessment for that, but I don’t know if they ever would have referred me for an assessment if I had just said, “I have chronic pain”, because it, it’s not great and it kind of sounds like a bit of a scam. Like I think that they’re just like, “Yeah, well a lot of people say they’re in chronic pain so deal with it”. So it’s been helpful.

So eventually, the doctor put me to the local hospital and I seen a doctor there, it took her five minutes. She touched certain parts of my body and told me I had fibromyalgia. I have had… I have a friend who has fibromyalgia that I’ve known for about six years, she has it really, really bad and I had never heard of it before. She talked to me about it, she was a person that was fit, healthy, had a job, ended up in her late 30s having to leave her job, and now she can’t walk properly, she has special aids in her house, she must drive an automatic car, disability stickers, walks with sticks, etc., etc. That worries me a lot. It worries me in case that’s where I’m going to be. She’s younger than me, yeah, I worry that that’s where I’m going to be.

In some ways it was a relief because it was a, a confirmation that my symptoms were very real and that there was a reason for them and, in some ways it made a lot of sense because you know, we’d ruled out rheumatoid arthritis and lupus, and from my own research and reading before I’d got the diagnosis that was something that had come up and I’d thought, “Oh, yeah, maybe it is that”.

And I think after that feeling had gone it, again, a feeling of you know, your life’s going to have to change, a lot of things are going to be different now, you’re going to be in pain every day for example, and for me it was a bit of a double hit because a year earlier I’d had the diagnosis of the autoimmune liver condition and it you know, I’d just got my head around that one and dealing with that and then you know, it, it was a second wave, it’s like you’ve just dealt with the first wave and things are just about okay but then another one comes crashing in. And yeah, you, me personally I wasn’t strong enough to deal with that as effectively because I’d already had the first hit.

I’m not too sure how I felt about it, really. I think I was still trying to process it because I think, maybe in the back of my mind, I had heard about fibromyalgia before, and I almost felt that I didn’t want to suggest it to my GP. I wanted my GP to suggest it to me because I had heard that some people, particularly with other things like ME and Chronic Fatigue Syndrome and things like that have said, ‘Oh, I’ve heard in the past that oh GPs don’t believe in it, it doesn’t exist,’ you know? There’s that horrible cliché of ‘It’s all in your head.’ So I thought, ‘Well, I’ll just see what the GP comes up with rather than me making suggestions as to what I think it could be,’ which sounds a bit strange [laughs] but that’s how I work. So, I thought, ‘I’ll see what the professional thinks first.’ And when she did say it to me, I don’t know… I didn’t feel any kind of relief, that, yes, here’s a, here’s a name as to what it is, or I didn’t feel sad because that’s what it is and I know that it can be a really chronic, crippling illness for some people.

I think for me, I was quite practical about it, I thought, ‘Okay, here’s the name, let’s have a look and see how it can be managed and let’s try and see what can be done moving forward.’ I don’t think I really felt anything extreme, but it was just kind of a bit of a, ‘Oh, okay, what next?’

How did you feel about this point, you know, like, as you say, you didn’t really want to bring it up because you had heard these stories, and then actually having your GP actually bringing it up, what did you think about that?

I was, I was quite happy, actually. I mean, I think she’s a relatively young GP so I don’t know whether it’s something that they’re – maybe they’ve got a newer school of thought, they’re not you know I’m making massive assumptions here [laughs]. Older GPs may not necessarily believe in it as much, but I was quite I think I felt quite reassured, actually, that she sat there and … I think it’s more the fact that she didn’t think that I was just coming for loads of appointments by going, ‘Oh, I don’t feel very well,’ you know, ‘I need sorting out.’ I think she took me quite seriously. And the fact that she had… you know, I remember when she first looked at my blood test results, she spent quite a long time wondering why, you know, she was looking at everything and thinking, ‘Well, no, it’s clear that you’re not feeling well, but then the biology is not saying what’s wrong with you.’

So I think the fact that she did take quite a long timeto look into what was going on and then came up with the fibromyalgia as a legitimate illness, felt quite, quite reassuring.

Well yes, I’d had this strange thing for quite some time and it was really annoying me because I seemed, as I’ve said, to have all these very peculiar unrelated symptoms. And, and then actually I went to visit my sister and, she just left me a, a magazine out to read while I was there, and interestingly in the back, under your sort of Dear Doctor things, there was here a thing about fibromyalgia. And I read that and basically it said exactly all these symptoms that I’ve just been talking about, and all of these peculiar things, it didn’t just say some things that seemed to be connected, just everything I’d been talking about was suddenly in this magazine in front of me.

So I took this to my doctor and said, “Well look you know, I’ve read this here and it seems to be saying just exactly what I’ve been saying, so what do you think?” So that’s when my GP said, “Oh well, we can test your, you know, your pain bits and see”, and which she did and then she said, “Oh well, I suppose then yeah, you could have that”.

But it quite amazed me because apparently even then fibromyalgia was said to be fairly common and not some really weird strange thing that nobody had heard of, and how they haven’t picked this up over all the years before I’m not quite sure.

So frustrating, but she said, “Well yes, you could have fibromyalgia and basically, well that’s you for life because you’ll never get rid of it”. So that was my diagnosis.

I think this is really important. I think that you know, when I was first diagnosed if I’d had something where I’d seen other people talk about it, people who lived with it and who say you know, “These are your options, some people find this helpful, some people find that helpful, and there are support groups out there you know”, if I’d immediately been given that at the point of diagnosis, that would’ve taken a load off me because that’s you know, that’s something that you know, I wouldn’t have had to go and find myself.

And I think that’s so important when you get a diagnosis is for doctors to say you know, “Yes, you have this thing, but loads of other people have this thing, here are support groups you can access. Here are things that you may find useful, here’s your starting point”. Whereas what I got was, “Here’s the diagnosis, here’s a leaflet about the condition and you’re on your own basically”, and you know, that’s terrifying. Getting a diagnosis in itself is terrifying, but then coupled with you’ve got to figure everything out yourself, where do you even start? It’s you know, I feel like it’s so important for doctors to say you know, “You might not want to do everything now, but here are some stuff that you may find helpful”.

That was about two years ago and it was the first time I’d heard, you know, mention of… I’d heard of fibromyalgia but it was the first time a healthcare professional had given me that label alongside, you know all the other, all the other conditions I have. And you’ll understand from what I’ve just said, I guess, Stefanie, that with my basket of health conditions, it’s actually quite difficult to unpick symptoms and assign them to one issue as opposed to another.

So yeah, that’s how all of, all of that happened. And then after I’d seen the rheumatologist and reviewed the blood test results with her, she gave me this diagnosis of fibromyalgia, and I mean, that, that was quite a… a shock really, to be given that, given that [gestures with hands]. You know, something completely new when I’ve got all of these things and I’ve got them kind of all arranged in my mind and I thought I understood the picture. To have something significant and new added into that… so I wasn’t really prepared for that. And my GP hadn’t said, “Oh, by the way, I think you might have fibromyalgia,” so I wasn’t pre-informed before the consultation with the rheumatologist, that that might be what her conclusion was.

And it’s a bit disempowering, you know, when you’re not, you’re not ready for it, you know? You don’t have the questions to ask that you otherwise might have had, if you had more time to think it through. I think the only question I asked her was, well, you know, “Is there any treatment or therapy or help or assistance that, that you can direct me to or recommend to me, that will help with it?” and that’s when she went to the set of booklets and picked out the one, I think, produced by the charity Versus Arthritis, and gave me the one on fibromyalgia.

And she said, you know, “Go away and have a read of that, there’s some self-help groups and so on,” and that was it. And I didn’t have a follow-up appointment with her, she said, “I don’t think there’s any benefit in you having any follow-up appointment with me, I’ll write back to your GP and I’ll copy you in and let your GP know what my, what my findings are.”

So when she said, you know, “I don’t see any benefit for a follow-up from my side,” and you know, how did you feel about this whole kind of appointment then?

Well, I think, in terms of emotions, shock is number one, as I’ve said. And bewilderment is the second one.

I can’t really remember that far because I think I was, I was so hazy about it because I just, “What the hell is fibromyalgia?” I don’t remember what she said to me about that. I went home and I researched it, that’s how I find out what fibro was, and then I felt offended after I read about fibro on the internet and I thought, “Fair enough, she must think I’m an hypochondriac”. Where else, what is fibro? Fibromyalgia is a label that you put on somebody who has chronic pain and no physical appearance to why it’s happening, so that’s how you’re left, you’ve got to deal with that.

So how did you feel about you know, this whole kind of diagnostic process?

I thought it was a copout, I thought they didn’t want to investigate fully what was going on with me because they just gave me this label and treated me accordingly, which meant upping my pain relief and giving me amitriptyline. I was also on gabapentin as well at some point, but the GP in this area said it’s not good for me to be on gabapentin so I was taken off that, and I was fine without that.

So the pain clinic consultant diagnosed you …

They diagnosed and discharge you.

And back to the GP?

Yeah.

So what did the GP think about that?

Nothing, just happy to prescribe me with the pain relief, that’s all, they don’t talk about it, they just send you home with your prescription and let you get on with it.

So there was no kind of discussion about …

No.

… that kind of, okay.

So she was surprised when I turned up in a wheelchair one day and, you could tell by the look on her face she was judging me, making herself opinions that, “Why the hell’s she in that wheelchair you know, there’s nothing wrong with her?” you could tell that’s what they were thinking.

How did you, you know, that process and then you know, what you just described you know, how did that make you feel you know, being, referred on and being diagnosed, back to the GP and then really feeling like, “They’re looking at me”, how does that make you feel?

Well you’re just made to feel like you’re lying, like you’re making this thing up, that you’re searching for sympathy or something, I don’t know, I don’t know. I don’t really get, gain anything from saying that I’m in all this pain, it doesn’t make me any better off.

So did you then you know, after that and you got the prescription, did you feel like, “I’m agreeing, okay, it makes sense”, or “Actually I don’t really agree with this diagnosis”?

I’ve never agreed with the diagnosis, I just settled with it, I’ve always said I’ve got arthritis and I still believe I do. I feel like the x-rays that they took of my knees; I don’t believe that they were normal. You put your hand on my knee and I can stretch my leg out and you’ll feel everything crunch, it really isn’t fibromyalgia, not, I’m certain of it.

They, that’s what I said, they just put a label on it and left you to deal with it because they don’t want to find out what’s going on, they just want to let you deal with the symptoms of it.