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Table 1 Quotations from participants

From: Patient insights on living with idiopathic inflammatory myopathy and the limitations of disease activity measurement methods – a qualitative study

Quotation numberQuotation
 1“I would say that the fatigue has more of an effect than the pain. Sort of, I get aches but that’s not the worst but, it’s just the sort of real exhaustion that is the worst.”
 2“Fatigue is my main component. I think for me rather than muscle weakness and rather than pain it’s fatigue, concentration and focus.”
 3“So washing my hair is not too bad and then when I’m coming to dry my hair, that can be difficult, holding my hands up.”
 4“What I’ve been able to maintain is like, short, sharp things. So if I have to do something quite quick, it doesn’t bother me.”
 5“My daughter likes her in plaits, and trying to plait her hair, that can get quite tiring, I have to rest my arms.”
 6“Then you start to do daily chores like having a shower or, in my case because I’ve got a little girl; making breakfast for her, helping her to get dressed, ironing her uniform for school. All of those day to day things that you used to do without thinking about it; adjusting the shower head, washing your hair.”
 7“I know tomorrow is going to be a rest day because of the drive today.”
 8“Profound weakness with my myositis seems to be much more background.”
 9“I think the fatigue side seems to be missed quite a bit, that’s never sort of talked about too much, it’s more justwhat’s your strength” and “are you breathing okay”.”
 10P12’s partner: “The logistics. Where is the toilet going to be? You know, where are the steps? You know, we have to plan everything. Everything [PARTICIPANT] does needs careful planning, because it could be detrimental to her wellbeing.”
 11“It’s not pain, it’s a really hard one to describe and I know other people will have said the same thing to you, it’s not pain for me it’s a muscle burning that I get. And I wouldn’t describe it as painful, I’d describe it as uncomfortable but yeah you can feel something going on but it’s really hard to explain and burning is the nearest I can get to it.”
 12“I get, what I call proper pain and then, in my legs and arms if I lift them or try to lift anything or try to hold them up for a length of time, washing my hair, that kind of thing, then I’ll feel like a burn like you get with extreme exercise.”
 13“I don’t feel that anyone [CLINICIANS] I’ve spoken to recognise pain as part of it.”
Day-to-day symptom variation – characterisation of good and bad days
 14I will be fine one day, the next day I can feel absolutely terrible.”
 15“I could be tired for an hour and be fine the next hour, particularly in the early days.”
 16“There’s a hill that leads up home, and if I’m having what I call a good day I can charge up it, and then a day where I know is a flare, I’ll stop two or three times.”
 17“But I just feel like I’ve been hit by a bus. And you just ache. But the next day everything’s okay.”
 18“I suffer greatly in the mornings, first thing. I can tell by the way I am first thing in the morning, I tend to get a grasp of how the day is going to go.”
 19“You do tend to do far too much on the good days, and then you pay for it a couple of days later.”
 20“There’s definitely a finite resource with the fatigue effect and I know that’s very difficult to quantify.”
 21“My condition is up and down all over the place so it can almost change day on day, which is ridiculous. Family and friends, that’s the hardest thing they struggle to get their heads around. I will be fine one day, the next day I can feel absolutely terrible.”
 22“I think doctors can’t understand either, that some days you can be quite well and other days you can be really, really bad.”
 23On the outside we look normal, we look well, you know, everybody says, “oh you look really well” … actually if they knew what a struggle it was for me to actually get to be somewhere … people don’t recognise the exhaustion and the tiredness that can go with it and the effort you have to put into doing the simplest tasks.”
 24“Myositis isn’t a common condition, so people don’t really understand what it is about so, therefore they’re probably more reluctant to ask what that is… So, it’s unknown isn’t it. Therefore, people tend to respond to unknown things with oh yeah, yeah, you’re looking okay, that’s fine it must be difficult, but I don’t think they quite know.”
 25“A lot of people have said that they’ve come out of the doctor’s office feeling quite frustrated because they haven’t been able to convey to the doctor that they feel the way they do.”
 26“Because I could have a really bad week in the first month after seeing the rheumatologist and then, by the time I’ve got there, I’m quite dapper and, you know, you walk in but, there’s been them days where you are crying in pain or you just feel so fatigued and brain fogged that…so, yeah because it’s so variable you can look totally different than you have been.”
 27“Your brain tends to remember good days...unfortunately, your brain goes back to a healthy state quite quickly.”
 28“So, I actually wrote it down in the book, sort of, what it was that started and when and how that had gone. So, I could go in and say this is what’s happened because I knew I wouldn’t remember what to say, this is how it was.”
 29“I get the CK checked once every few months, but that never correlates to having a flare.”
Limitations of CK levels and MMT as measurements of disease activity
 30“My own feelings are that I quite often feel worse than the results that come back from any of the tests [CK level] really.”
 31“Although there is a three hundred limit for normal, when my CK score goes from about one-sixty, one-seventy to two-forty, two-fifty, it is still within the normal range but I am in full flare.”
 32“I feel that because my CK levels have come down that I just feel that’s what people are happy with and because it’s all judged on that.”
 33“I find medical professionals and different people interpret it [CK levels] in different ways.”
 34“I could walk a short distance, but if I had to keep walking then I would really struggle and probably need to go to sleep afterwards. Like lifting an arm up, I can do it once but if I had to hold the arm up for any length of time, I wouldn’t be able to do it.”
 35“I don’t think it gives a very accurate representation of strength because I think people try really hard to resist and showing how strong they can be, because that’s your nature isn’t it, you want to try and do well in it, but actually the effort that’s involved can really exhaust you, and as much as anything it’s repeating those movements.”
 36“I think the fatigue side seems to be missed quite a bit, that’s never sort of talked about too much, it’s more just is what’s your strength and off you go.”
  1. CK creatine kinase, MMT manual muscle testing, IIM idiopathic inflammatory myopathy