Fibromyalgia

And so it’s just constantly there, and you know, the medical profession are great, I’m very fortunate that I do have a doctor who knows and understands and is very empathetic to fibromyalgia. So that case, I feel quite blessed. And when I have my appointments with him, you know, it’s very much that they take onboard what you say. There is contact with, with me, they make eye contact with me, they make a point of… you know, even though they’re putting things down on a computer that they, they interact with me, they let me know that they are listening.

Well, I have support from my GP you know, when I, I need any sort of items or additional items you know, I get telephone consultations. It’s not always easy to get an appointment with a GP, so … They’re quite good at calling you and speaking to you and so they’re very much aware of what, obviously what I’ve got. So the other people I see are also the mental health group, you know, they’re very good I’ve been fortunate to be tied up with someone who has had experience in dealing with pain so I’ve been kind of fortunate that I have seemed to have landed in the, the right places. And most importantly but not least, is the… is the, the consultant that I see at the hospital every sort of [pause 4 secs] two months, it now is.

Regularly seen at clinic, they’re available daily if I need help, you know, there’s a helpline, and they’re really, really good if I need help. If I need anything, they’re very, very good. We also have a unit [locally] for people with rheumatoid arthritis and other arthritic things, they’re very good at supporting. So that side of it, I’m well supported on.

I just ask. I just ask, I don’t just sit there and [eh] yeah, probably… I’m probably quite annoying now, actually, when I think about it [laughs]. They’re probably saying, “Oh no, here she comes again.” [laughs] I just ask, and if they say… my, the rheumatology consultant is great, he’s great, very approachable.

It gives me a confidence that I can… it’s a trust, isn’t it? And my GP, you know, I seem to be ignoring him in all of this, but he’s very good as well. He’s very good, he knows me well, he’s been with me through all of this, and he does explain everything very, very thoroughly, very clearly and if there’s anything that I want clarification on, he will explain. He won’t just… you know? And he listens, that’s a big thing, you know? They both listen. So yeah… which is great now.

Again, it made a huge, a huge difference. I know your standard appointments are meant to be ten minutes, which is, particularly, when it is about trying to explain how you feel, and trying to explain how you feel when the symptoms are not understood as well, so it’s not like going, ‘Oh, I’ve got a temperature and a sore throat,’ ‘Okay, this is a viral infection,’ you know, ‘Give it five to seven days.’ You’re trying to explain pain and feeling the way that you do when pain is seen as, like, a perception. It’s, it’s very unique to each person as to how you feel. So I think the fact that she did give me the time and she wasn’t sat at the computer screen, tapping away and not engaging with me, you know, she actually sat, looked at me and talked to me about it first, then said, ‘Right, well, let’s look at your blood test results,’ you know, I think she almost seemed quite confused by some of the results that were coming up, to the point that I think she wanted to get a book down from the shelf and [laughs] have a look through.

I went back in three months and I saw another arthritis consultant and I was very pleased with him because he was very honest with me, he said, “Listen, you have been diagnosed with fibromyalgia, we have diagnosed you with…” is it negative… seronegative arthritis. “But from what I’m seeing, arthritis is not your problem. The fibromyalgia seems to be the most top thing and because of that, I can’t help you. I’ve got nothing to help you, so I’m not going to pretend that I can help you and I’m not going to get you to come back to see me with the pretence that I can help you, so I’m going to sign you off and ask your doctor to maybe get you into the pain clinic.”  I thanked him because someone wasn’t treating me like I was an idiot but was actually being real with me.

Just someone telling me the truth. Just telling me the truth is enough for me. It’s enough, because I’ve had so many consultants, different consultants, nobody can give me the answer, you know? I’ve had five allergy tests; no one can give me the answers. And someone was able to say, “We can’t help you. We know what it is, we don’t know how you got it, but we can’t help you,” that’s just enough for me. Instead of him saying, “Well, hmm, how are you feeling today? Oh, you know, where are the parts that hurt the most? Mm, mm, take a warm bath, get some rest, take some tablets, and we’ll see you in three months.” He didn’t do that; he was very honest. I love that, I love the fact that he was – I mean, he just stood out as… for me, integrity is important and that stood out for me.

So when you say “integrity”, what would that compass, or what would be that looking like?

Someone being transparent, someone being honest, someone who is able to stand upon their professional word and say, “This is where we’re at, but unfortunately…” that’s integrity. Instead of doing the flim-flam you know?

It might be good if there was… I think it’s a bit unfair to ask the GP to answer all these things because I doubt very much if a GP… I know that lots of GPs don’t think fibromyalgia is a thing, and I know a few who do, so the ones that are maybe sympathetic to the cause are good, however it might be a good idea if there was somewhere that you could go to ask the questions, you know? I don’t know. Something like McMillan nurses, you can phone them and ask them about cancer. Maybe the same kind of thing, because I know that fibromyalgia is not the only chronic pain illness; there’s lots of them. But finding somebody to ask about them, yeah, really difficult, but it would be good. It would be good to, you know, to ask people, “What is a pain clinic? What are they going to do for me? Is it me that’s going to help them or them that’s going to help me?”

I think having a person that is not a doctor, not a GP, even if it’s just a nurse or someone that you can phone for information on what you have. Or, well, as well as information on… so they’ve referred me to a pain clinic, what is that? You know? How is that going to help me and why do I have to go to that before I sit and talk to you about what we’re going to do for the future? So yeah, all of that. I think… but maybe not a GP because I know that they’re busy and I know that there’s people that are seriously ill that need them more than I do, so maybe like a health visitor, but a person that can deal with chronic pain. [nodding] Yeah, good idea. There is, I’m sure, hundreds, thousands of people that would be really grateful for someone to talk to about that.

[My GP] was quite up yeah, he’s a good doctor, really, really good into thing, [nationality] man. He was quite, what would you say, knowledgeable about the condition, he’d, he knew, he’d heard about it and all this or whatever, he, he kind of knew it wasn’t accepted by the kind of British Medical Council or whatever you call them as such, but then he obviously did.

I sympathise with some doctors as well because they’re just not trained for it. I don’t know how. They would, they would all have to get together and have a decent kind of, or at least one or two higher up doctors from hospital could have a convention with other world doctors, and then they should explain and they could pass it on down the line to their own trainee doctors, whatever. And they don’t have to be a young doctor to do that. Obviously would find it interesting to find out what was what, but then again, “Oh, it doesn’t, it doesn’t”, but it does, it’s there, by god there’s too much people got it for it not to be there. It’s, it’s just a stinker.

But it is obviously a waiting time, but when it comes to GPs, I often find that they’re very quick to want to get people out of the door, if they can’t, if it can’t be fixed with antibiotics they don’t want to see you, that’s my experience anyway. And I’ve not ever seen a private doctor because the fees can be extortionate, so.

But I think had I had private healthcare maybe things would’ve been going quicker and I would’ve got a diagnosis quicker and I would’ve been seen by neurology teams quicker, and there wouldn’t be a year between appointments as well, because that’s, that’s the thing, it’s like you’re waiting a year to see them again and you can, like they say you know, “If it worsens try and ring up and we’ll see if there’s an appointment forward” and there just never is, and then they, if they need to see someone sooner they’ll cancel your appointment and move it back.