Fibromyalgia

I think she was I think the first doctor I saw that it didn’t feel like there was a time pressure on the appointment. You know, I felt like I went in and you know, she asked me my concerns and, I said to her, I said, “Well like you know, I’ve got a list of notes, like is it okay if I give it to you?” and she said, “Yes, of course, that’s helpful you know, let’s go through it, let’s talk about what’s on there, let’s make sure we’ve covered everything that you wanted to talk about”.

And I really felt that she listened to me and that she understood and that she wanted to hear my whole perspective before giving me any of her opinions, where I feel like some doctors that I’ve seen in the past you know, I go in and I say, “This is my concern”, and they immediately try to say you know, “This is what it is and this’ll fix it and don’t worry about it, and out the door because I’ve got other patients that I need to see”. Whereas with her it was you know, “No, what’s bothering you, tell me everything and then we’ll figure it out together”.

Listen to the patient, just listen to what the patient is telling you, because sometimes they’re not really telling you what they need to be telling you. You know, I go to my doctor and he says, “How are you today?” I say, “Oh, I’m fine,” and I think, then I think to myself, “Well, why am I sitting here if I’m fine?” you know? But then he’ll ask the right question, he’s okay, he’s good. Yeah, just, just get the patient to talk, don’t just make a judgement before you hear what the patient is saying.

You just said your GP was asking the right question, what is the right question he’s asking?

What he does is, which is very, very clever and it’s very, very cringing sometimes, he’ll go back and he’ll work his way through your last few consultations, and then he’ll say, “So what has changed?” and that’s clever, that’s clever to go back through. My current… the two GPs that I would see, they’re the only GPs that I’ve ever experienced that have done that. They’ve gone back and worked forward to the present. I think that’s quite important because sometimes you forget about why you’ve been to the doctor before, and you think you’re going with something new, where in fact it might be something you’ve already seen them about. They’ll think, “Well, six months ago you came with that, and now here you are coming with it again today, maybe we need to look at this,” do you know what I mean? And I think that’s quite useful.

Why do you find that useful?

Because you forget. You forget. Say you’ve got a headache, yeah, say I’ve got a terrible headache today and I think, “Oh, I’ll just take some paracetamol,” and then it goes on for a week – this is an example, I’m not saying this has happened, and then I think, “Right, after a week, I’ve still got it, I better go back to the doctor,” and then he’ll maybe go back and say, “Well, six months ago you had that and you came back a month later, and you’ve been coming back with this. So maybe we need to really look at this,” do you know what I mean? I’m just using that as an example. Whereas I might… [uses finger gesturing to head] when you’re not feeling well, your brain gets fuzzy, you don’t remember, so I probably won’t remember that I’ve been back that often.

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 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.

So I think it was almost like for her, this was an experience for her to be able to learn as well, or find out more about what was going on. And I think having that sort of shared opportunity to sit and have a chat about things and not be sort of thinking, ‘Well, you know, you’ve had nine and a half minutes, in the next 30 seconds I need to get you out so the next person can come in,’ I think was really helpful.

So I mean, I don’t think it was a ridiculously long appointment, it was probably about 15 minutes, but I didn’t feel that she wanted me out the door. It was almost like she wanted to… you know, I’d given her clues and she wanted to piece the puzzle together for me, and I think it was… well, I don’t know if it was interesting for her, but it was sort of a thing for her to find out as much as it was for me to find out, and I think she wanted to solve it for me as well, so that was really reassuring. So I was really lucky, I’ve [laughs] had a good GP.

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.

A specialist, clinic, and that clinic would involve a specialised nurse and consultant from the onset of having the symptoms to the diagnostics, and then that clinic, this is what we’re fighting for at the minute, that clinic would continue to help those that we get in the support group that we could send them to.

I think fibromyalgia is around too long now that we haven’t got a specialist clinic; we should’ve had it.

The treatment, the fact that you’re sitting talking to somebody that understands what you’re going through, understands that you’re talking and you’re not making sense, understands the fog, understands it all would be so, so helpful to fibromyalgia sufferers.

And where would you, think is that best based, say in primary care, at the hospital or somewhere else?

I would say the hospitals, yeah.

Yes, the reason why I’m saying that will be because when you go to a GP, and I’m not, now I’m not talking about myself, you have like a 15 minute slot, which isn’t enough. So if you go up to a clinic you would have maybe two to three people, and you would have more time to explain and whether new symptoms or whether you’re getting worse or maybe you, you’re in a fog, that the, it’s dedicated to fibromyalgia you know, and I would also bring in, and I think it would be fibro, to the, with anybody with fibromyalgia to bring in, the holistic view, and that’s very important.

So what would be that encompass or include, like holistic view what, what do you have, for ideas for that?

Right, I would say, definitely, the physio department would probably be the best to do this would be, they wouldn’t need that much training, the pressure point therapy, shiatsu, reflexology and what did you call that one I was talking earlier about, put the needles in?

Oh, acupuncture.

Acupuncture, yeah, yeah, and massage, and like they have all the training for that really, like it’s just a matter, that will be the best, the best in my view to provide that treatment, the holistic care would be the physio department. But then again, it would have to be dedicated to fibromyalgia.

Again, it’s… I think having a referral to someone or something about management planning or pacing or learning about… so I think that’s probably part of my motivation as to why I went to occupational health as well, is because I think I’d spent quite a lot of time looking for a resource or something online that would help me with structuring and pacing and managing, sort of, like, even having like a tracking thing for monitoring my symptoms and how I was feeling on particular days, so I’d be quite keen to see if there’s any particular patterns.

So you know, are my symptoms worse when it comes to my time of the month? Or is it when I’ve got particularly stressful things at work? And then having a kind of… maybe keeping a diary in the first few months and then being able to discuss it with someone. Who that someone would be, [laughs] goodness knows, because it’s not up to a clinical psychologist because it’s not, sort of, a mental disorder as it were. And I know GPs aren’t necessarily good at giving management planning. I would say health psychologists, but we’re not recognised in the NHS enough [laughs].

But having almost something where you can sit and you can do some symptom management based on the key symptoms of fibro, you know exactly what they are, being able to track it and then going to someone and saying, ‘Look, this is what I’ve noticed, this is what I’ve found, help,’ you know?

That, that kind of thing. I think that’s probably why I went to occy health, was to say, ‘I need help in planning.’ You know, I can do daily planning and sort of, you know, time management is not a huge issue, but I think it’s then saying, ‘Well, actually…’ or getting someone to look at your plan for the week and then saying, ‘That’s too much, do you think that’s too much?’ And learning tools in, in how to do that, and then sort of thinking, okay, ‘What are my triggers for my symptoms? What, what how do I know when I’ve got a flare-up coming? How do I manage my flare-up?’ So just, just that kind of whole overview as to what, what I should do.

And I think the fact it’s not a one-size-fits-all illness, so you can’t just have a generic piece of, you know, of graph or a table on the internet saying, ‘This is what you should do.’ It should be like, ‘Map it out, track it,’ and things like that. I think I took into my own hands prior to my diagnosis of doing my own symptom tracking, because I think part of me at one point thought it might be ME and not fibromyalgia. Because I think I had a bit more understanding of ME than I did fibro, but then I was like, ‘Oh, actually, no, I’m in pain quite a lot,’ but then that was all through myself and not with help from other people.

A specialist, clinic, and that clinic would involve a specialised nurse and consultant from the onset of having the symptoms to the diagnostics, and then that clinic, this is what we’re fighting for at the minute, that clinic would continue to help those that we get in the support group that we could send them to.

I think fibromyalgia is around too long now that we haven’t got a specialist clinic; we should’ve had it.

The treatment, the fact that you’re sitting talking to somebody that understands what you’re going through, understands that you’re talking and you’re not making sense, understands the fog, understands it all would be so, so helpful to fibromyalgia sufferers.

And where would you, think is that best based, say in primary care, at the hospital or somewhere else?

I would say the hospitals, yeah.

Yes, the reason why I’m saying that will be because when you go to a GP, and I’m not, now I’m not talking about myself, you have like a 15 minute slot, which isn’t enough. So if you go up to a clinic you would have maybe two to three people, and you would have more time to explain and whether new symptoms or whether you’re getting worse or maybe you, you’re in a fog, that the, it’s dedicated to fibromyalgia you know, and I would also bring in, and I think it would be fibro, to the, with anybody with fibromyalgia to bring in, the holistic view, and that’s very important.

So what would be that encompass or include, like holistic view what, what do you have, for ideas for that?

Right, I would say, definitely, the physio department would probably be the best to do this would be, they wouldn’t need that much training, the pressure point therapy, shiatsu, reflexology and what did you call that one I was talking earlier about, put the needles in?

Oh, acupuncture.

Acupuncture, yeah, yeah, and massage, and like they have all the training for that really, like it’s just a matter, that will be the best, the best in my view to provide that treatment, the holistic care would be the physio department. But then again, it would have to be dedicated to fibromyalgia.

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 [nodding] 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 it would have been nice to have even had just a… I mean, I know that GPs are so stretched and I completely understand that, you know, they’re not sat twiddling their thumbs, thinking, you know, this, that, the other. But I think even receiving a letter back from the rheumatologist and the fact that they’d been discharged back to the GP's care, even just a little telephone call just to say, ‘Just to let you know I’ve received the letter back from the rheumatologist,’ you know, it’s the first official diagnosis, is everything – not saying, ‘Is everything okay?’ because that’s obviously more of a sort of therapy question. But just sort of saying, ‘Is there anything I can do to help you in terms of a management plan?’ or, ‘Would you like to come back in and see me?’ or, you know… or even just to say, ‘If you’ve got any questions, please feel free to make an appointment.’

So that’s you know, that could have been a letter from the doctor or something, and I think but I mean, that’s not uncommon with anything within the NHS. Things sort of… once you get discharged back, that’s kind of a bit like, ‘Well, it’s done now, it’s done and dusted, there’s no need for follow-up,’ and I completely understand that that’s because, you know, you’ve got however many people coming through the door for the next diagnosis or the next… you know, the next problem that’s coming through. But I think… it seemed like there was so much going on within a really short space of time, a lot of referrals and a lot of seeing people and a lot of tests, and then it was kind of a bit like, ‘There we go,’ because fibromyalgia’s not massively understood or massively thought about, or we don’t know how to treat or cure it, like, we’ll kind of leave it up to you know time, I guess.

I think with hindsight looking back it would’ve been good of them to say you know, “We’d like to book an appointment to discuss treatment options”, because you know, I had mentioned several times that the codeine wasn’t helping with the pain.

So I feel like at that point they could’ve said to me, “Come back and we’ll consider whether, pain management options”, even if that was just a you know, “We need to talk to your consultant and see what is safe for you to take, but once we’ve done that we’ll talk to you again and we’ll see what the other options are”. You know I, because of that I had to wait until I had an appointment with my liver consultant to go and ask him which ones were okay, and then you know, the next step was go and see the GP and tell them that the consultant had said, “These are okay so can we try one of them?” but, then of course the Coronavirus happened, [laughs] so that’s, yeah, that’s been put on pause for the moment but yeah, that’s next step I think for me. But again, that’s something that I will have to organise myself.

How does it make you feel that you feel like you have to organise that all yourself?

I mean in some ways it does make sense to me because you know, things change with time, you adapt to things you, you know, and not everybody with fibromyalgia is going to need the same level of care and the same level of treatment. So in some ways to me it makes sense to say you know, “If you need us come and see us, but if we don’t hear anything from you we’ll assume things are okay”.

But I think what really is still bugging me is that when the rheumatologist signed me off and sent me back to the GP I didn’t hear anything about a follow up appointment from that. And I think that’s something that’s really important if …

I know some people who have fibromyalgia they still see rheumatology and they stick with that rather than the GP, but I think if you, if you are referred back to your GP, at that point they should want to see you again and talk about it.

So probably, getting in touch with me [smiles] rather than me getting in touch with them about my pain medication, so them keep, keeping track of it. I feel like sort of like they don’t even know that I’m on it [shakes head], so I could’ve just been on it for the, for the rest of my life and it not been followed up with. Yeah, I think that, that’s one thing that I’d prefer.

Another thing is you know, referring me to, to groups, local groups or other people that have it, or even setting up their own group of patients, that would be quite nice, something a bit more personal. Maybe just ringing to check in with me. Again, I know they’re really busy and I know that that’s probably the last thing on their mind, but it would be nice, it just would be nice [shrugs with left shoulder] if that could happen. Yeah, just really sort of managing it with me rather than me managing it and then being a sort of side part of it.