Catherine
After experiencing pain for several years, Catherine was diagnosed with fibromyalgia in 2017. She feels well supported by health professionals involved in her care. Her advice to others with fibromyalgia would be to “just try and be positive…”.
Catherine is 67 and divorced. She works full-time as a secretary. Ethnicity: White Scottish
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Around 2012, Catherine describes starting to feel very unwell, experiencing extreme pain for no apparent reason. Over a period of time, she had numerous blood tests but no cause for her symptoms was found. She lost a lot of weight during this time and was initially very concerned that she might have cancer. She was eventually diagnosed with rheumatoid arthritis and then in 2017, Catherine was also diagnosed with fibromyalgia by her rheumatoid arthritis consultant.
She describes her diagnosis as somewhat reassuring in the sense that she wasn’t imagining things and that it wasn’t something more worrying like cancer. She also feels that knowing what it is can be helpful because “I know what I’m dealing with and it just made it easier for me.”
Sometimes Catherine finds it hard to differentiate the pain she experiences from the two conditions. She also experiences fatigue. Catherine finds that the drugs she takes for her rheumatoid arthritis are helpful, but don’t help with the pain from fibromyalgia. She describes how this led to her “being prescribed massive pain killing stuff,” which she now tries to limit unless she feels she absolutely needs the painkillers. Catherine was offered CBT for her fibromyalgia. However, she strongly believes that talking about her pain is not going to be particularly helpful for her because “I know I’m in pain, I don’t need anyone to confirm that”.
Catherine finds her GP and rheumatoid arthritis consultant very supportive as she feels that they listen to her and explain things well. She values the support she receives for her rheumatoid arthritis which also helps her cope with her fibromyalgia. However, Catherine wishes there was a similar style of support clinic for people with fibromyalgia.
Keeping active, staying busy and refusing to “lie down and be ill” is Catherine’s way of coping with fibromyalgia. She doesn’t want to be viewed as being disabled by having fibromyalgia. She enjoys working and being useful to her colleagues. She describes her line manager as very supportive. Further, Catherine tries not to let her fibromyalgia negatively impact on her ability to see her friends. She acknowledges that other people with fibromyalgia might have their own individual ways of dealing with their condition. However, her advice would be to “just try and be positive…it’s not all negative”.
Catherine feels well supported at a clinic she attends for another condition. She trusts her GP and feels that he listens. For her, this is a “big thing.”
Catherine feels well supported at a clinic she attends for another condition. She trusts her GP and feels that he listens. For her, this is a “big thing.”
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.
Catherine doesn’t think talking about her pain is going to be particularly helpful for her.
Catherine doesn’t think talking about her pain is going to be particularly helpful for her.
I was offered CBT, I was offered the pain clinic and I thought, “Talking about this isn’t going to make me feel better, I know what I’m living with, talking about someone else isn’t going to make me feel better.” It’s not going to make the pain go away, I know I’m in pain, I don’t need anyone to confirm that. I’m not particularly happy about taking lots of painkillers for the pain because it just leads to other issues. So the rheumatoid arthritis bit of it, I’m well supported with it. And there is probably a connection between the two: the rheumatoid arthritis and the fibromyalgia. So, I feel that the support I’m getting with the rheumatoid arthritis is supporting the fibromyalgia, you know, and helping it. But that’s me, my opinion.
Catherine prefers NHS information and websites that don’t have “too much jargon.”
Catherine prefers NHS information and websites that don’t have “too much jargon.”
It was mainly NHS websites, Arthritis UK, I would just do a fibromyalgia search and just look at whatever came up. The, it was usually the sites that didn’t have too much jargon, the ones that just pinpointed the symptoms.
Did you feel like, because some of the participants told us that, you know, when they’ve went online to look for information that they… differentiated between what they called dodgy websites and websites they trusted, how do you feel about that?
Well, there’s always those websites that you’ll go onto that give you all this and direct you towards using a certain product. Which, yeah, I think I’m probably guilty of in the past, using stuff because it said this is a miracle cure for whatever, you know? I think I’m a bit more savvy now when it comes to that. But I stuck to the ones that were more factual about illness, I thought if I had the facts then I’d know the right questions to ask when I go to my doctor or my consultant. Because I’m already taking some very serious medication, I don’t want to go down the road of taking something that’s going to have a contrast with anything I’m taking because I value the way I’m feeling now compared to the way I was feeling before. I mean, I can… you know, I’m quite mobile.
Catherine doesn’t think she would gain much from talking to other people with fibromyalgia and doesn’t want “negative stuff.”
Catherine doesn’t think she would gain much from talking to other people with fibromyalgia and doesn’t want “negative stuff.”
I don’t think it would help me. I would happily go and listen to other people’s… [shaking head] but talking about my condition isn’t going to help me feel better about it. It’s not going to cure it, talking about it just reminds me that I have this and my coping mechanism is to not think about it and not talk about it. But, I could go to these groups but as a listener as opposed to talking about me. Is that selfish? Hmm…
Sometimes it’s quite nice to talk about something without it becoming a discussion or a competition. You’ve got a sore arm, oh, well, both my arms are sore. How sore are yours? Well, they’re sore. Oh, well, mine are worse. Now, that to me is not, that’s not a positive way to deal with something. I think if it’s… if someone just wants to talk about… I’m a good listener, you know, I’m quite happy to sit and listen to people.
I’m not saying that I’m perfect because I sometimes do interrupt, I think, “Oh, I’ll chip this one in,” but I would go and listen to other people talking and be quite happy to do that. But for myself, I just don’t think I would gain anything, talking about it to other people.
I think it would just endorse the fact for me, something that I’m trying to live with… I would hate to think, to go along to one of these groups and think, “I’m dealing with this really well, right I’ve got this, I’ve got this, I’ve got this. I’m taking this medication, that’s fine. I’m able to go to work, I’m able to…” blah, blah, blah, and then go along and hear somebody saying, “Oh, well, I’ve got this and oh I don’t go out anymore, and then oh and I can’t do this and I can’t do that. I’m in this pain, I’m in that pain.”
I don’t want negative stuff, I don’t want to be sitting there, thinking, “Oh my goodness, am I taking my illness too lightly?” Should I be thinking, “Oh my goodness, I’m really ill, I maybe shouldn’t be going to work, I maybe, I maybe should be lying in my bed in the morning, maybe getting up at lunchtime and maybe not even doing the gardening anymore because it’s too sore.” Does that make sense? I mean I… yeah.
Catherine also says that it’s important for health professionals to listen. She praises her GP for being able to ask the right questions to find out what might be wrong.
Catherine also says that it’s important for health professionals to listen. She praises her GP for being able to ask the right questions to find out what might be wrong.
What would be your advice for healthcare professionals?
Oh, wow. That’s a big one, that’s a big one. 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.
Catherine praised her GP for being able to ask the right questions.
Catherine praised her GP for being able to ask the right questions.
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.