Table 6 Relevance and experience of pain for adult and child participants by syndrome

KT

Um, on a day-to-day basis it—I, I would more describe it as an ache. Um, and if you think, the best way I've seen in literature and things is like that old man's weather ache, just that it's just been a constant ache that—and it—and it just makes you a little bit tired. [Adult, Age 38]

Um, sometimes I get sharp pains, um, up through my leg and sometimes it's just like an achy tiredness throughout my leg. [Child, Age 14]

Adult

5

5 (100%)

Child

6

6 (100%)

CLOVES

It's, it's like a throbbing pain… it happens any time I just put, you know, any sort of pressure on, on my leg. So, if I'm walking, like, a far distance or if I'm running, erm, that pain… And the pain doesn't start right away. The pain'll start, like, later that evening, so maybe, like, three hours or four hours after; and then it'll last probably, like, four hours; [chuckles] and then it goes away! [Adult, Age 37]

It comes with a lot, like, of chronic pain for a lot of people, erm, so I usually am in pain somehow! [Child, Age 17]

Adult

1

1 (100%)

Child

4

3 (75%)

KT & CLOVES

Erm, so my hands it's like a throbbing, like a pulsing kind of feeling, erm, like kind of like your veins are exploding… and then my hip is, is like a buzzing, it's like a, almost like, how would I say it? It's like electricity, I guess. An electrical, I don't know, an electrical shock type of pain. [Adult, Age 41]

Adult

1

1 (100%)

Child

0

0 (0%)

M-CM/MCAP

The achy pain that I get sometimes and, um, er, I'd say the, er, the overgrowth. Um, it's affected my feet so it's caused, um, me getting shoes to become difficult. Ah, usually in my legs. Um, sometimes it's the back of my legs, um, and it's not very often that it happens; it's just once in a while. [Adult, Age 25]

Adult

2

1 (50%)

Child

3

0 (0%)

FAVA

…so in my case, it is in my left glute muscle area, um, and it is in my upper thigh, um…in the back part of my thigh, so up by my hamstring, um…and I experience a lot of swelling, pain, um, so having pain, nerve pain, um, the nerve pain is very shooting, um, sometimes stabbing pain, um. The skin can get, I mean, mostly it's swelling. Um, I get some sciatic pain that shoots down my leg and I get, er, it impacts my mobility. [Adult, Age 25]

But the pain goes up into my, erm, upper thigh, and to my left butt cheek… My calf, my ankle, my foot, erm. Yeah, it kind of just spreads all over, erm…definitely, painful, sore. Usually—not a day'll go by without pain. Constant pain, a lot of the time. There are very, very few times I'm not in any pain. [Child, Age 14]

Adult

1

1 (100%)

Child

5

5 (100%)

LM

Um, before I got the bump on my tongue cut off, it used to be very bad, like I couldn't eat because it would swell up so much, but now it's fine. [Child, Age 10]

Adult

0

0 (0%)

Child

2

2 (100%)