Table 4

Participant quotes relating to theme C: Lack of effective treatment for pain

A range of treatments (prescribed to home treatments)
I’ve had to buy like, an electric blanket for my room…so that if I wake up in the night, hopefully, I won’t be in as much pain as I was before. (P4)8a
Sometimes heat, like heat packs or stuff like that. They often make it better. (P5)8b
I’ve got bands for my wrists, the acupuncture bands…they seem to work…when I feel sick. (P10)8c
(My mother) will get me like, like, lavender bags, to put around my bed, cos that’s supposed to like, relax your muscles…you’ll just fall asleep so you’re like, oh did it work, did it not. (P1)8d
I have baths and I have like Epsom salts in them… and that helps like relax the muscles. (P1)8e
Massages help…like it feels like pressure, yeah, I guess pressure helps a little bit sometimes. (P9)8f
I saw an osteopath for a little bit, umm, but, I mean, it didn’t really do much, it did to begin with, like it felt nice and was more comfortable, but it just got worse and can’t do much for me anymore. (P9)8g
They put me on like, lactose intolerant diets cos I, I got, I get really bad tummy pains with(CFS/ME). (P1)8h
It’s sulphidine and magnesium tablets I get. Not sure if they’re counter or not. (P10)8i
Limited to no impact on pain
It takes about half an hour for [painkillers] to actually, like, start working…(it’s)a lot less painful. (P10)9a
(Painkillers) slightly take the edge off. (P5)9b
(Painkillers) might like, knock the pain down a bit but it’s not like, it’s not a permanent, like, relief of the pain. (P4)9c
The migraines don’t really do much with painkillers but headaches and joint pains, generally works quite well. I don’t think anything works with my knee, yet. (P2)9d
I don’t feel like it’s the kind of pain… that can be solved by like paracetamol or something. (P11)9e
Negative side effects
The effects haven’t been good so I’m coming off of it now…. I’ve been sad quite a lot, and we think it’s because of it, so we’re gonna try and get off of it cos I’ve just been crying a lot… it’s just being sad, but for no reason. (P7)10a
The doctor said I couldn’t take anymore ibuprofen cos like, I was gonna damage my tummy. (P1)10b
I’ve been told to try and do yoga and stuff but yeah, it doesn’t really help at all. It kind of makes it worse. (P4)10c
(Going to the osteopath) didn’t really do much, it did to begin with, like it felt nice and was more comfortable, but it just got worse. (P9)10d