Table 4 Quotes of participants on pain, fatigue and emotions

15

P1.3: That there are things you can’t do, well, you can solve that in another way. But the pain I think is the worst.

P1.4: It’s so tiring, isn’t it?

P1.6: Yes terrible.

16

P3.5: The problem is simply that I feel very insecure about fatigue. The fatigue that, that I…

P3.6: Fatigue, yes, that’s right.

P3.5: … notice all the time, I find it very bothersome to function around noon, when I’ve worked I simply have to sleep for an hour.

17

P1.1: The first thing that popped up when I was asked to participate in these interviews was a kind of old rage from 15 years ago that it happened to me.

18

P1.2: This last period so many things are happening one after the other, eh, because of this medication, all kinds of side effects, that I’m really angry and also a bit desperate.

19

P2.3: There was a moment I had the feeling of why does this have to happen to me?

20

P2.5: I notice that at times when I’m really tired, I can be really grumpy with those around me.