Table 3.
Selected participant quotations pertaining to the symptoms of flare-ups
| Symptom | Representative participant quotations |
|---|---|
| Swelling | “But it does seem to be more internal swelling, though. It’s hard to see a lot of swelling on the outside. Like my hip is swollen right now. It doesn’t really look swollen, but I can feel it on the inside.” (Female, aged 30–39 years) |
| Warmth | “You know when you touch your forehead on a fever? That’s kind of how it feels like. But the warmness is not constant. Like now, it’s just the same temperature as the skin around it. But some days, it’s just really warm.” (Male, aged 20–29 years) |
| Redness | “I do notice that the warmth and the redness seem to correlate. So the kind of surface flare-ups tend to be red and warm and very painful to someone prodding them. The ones that aren’t red don’t tend to be as warm.” (Female, aged 40–49 years) |
| Pain | “It’s a fairly new flare-up right now, and I can’t tell if a new bone is going to form. Because this pain in my ankle’s been going on for – I would say for a couple months now, but I don’t think it was a flare-up the whole time. Like I said, sometimes if it’s an area that I use a lot, sometimes it’s a flare-up, and other times, it’s just normal pain, which is also something I’m used to dealing with, because pain tends to come with FOP, flare-up or not. Usually everyone with FOP is dealing with some kind of pain, whether it’s back pain or whatever.” (Male, aged 20–29 years) |
| Headaches | “They’re up in my neck right now, and there isn’t much space for them, so it can give some headaches and stiffness and touch some nerves. So, it’s quite painful. But when the swelling is gone, it’s OK again.” (Female, aged 30–39 years) |
| Nerve pain | “I have a lot of them [flare-ups] in my neck and upper spine. And when they start, I just start feeling numb, and it hurts and feels stiff, and sometimes nerve pain can start, too.” (Female, aged 30–39 years) |
| Joint stiffness; decreased movement | “The decrease in movement is longer. It’s overall long period of time. The joint stiffness goes away after a couple of days.” (Male, aged 20–29 years) |
| Bone growth | “… there could be like a bone the size of a drop of glue that’s preventing me from being able to bend my elbow. It could be something as small as that. Or it could be a larger one. But in most cases, it could just be the smallest little piece that’s preventing you from being able to move a joint.” (Female, aged 40–49 years) |
| Itching | “It’s inside. Instinctively, I want to scratch, but it doesn’t work. In my case, it itches more and more at the beginning of the flare-up.” (Male, aged 30–39 years) |
| Visible veins | “You used to see actual veins start being—it was like something was alive in there, and veins were forming. It was moving.” (Male, aged 20–29 years) |
| Whole body feeling hot/cold | “I think the body itself also gets hot and cold a lot of the time, too.” (Male, aged 20–29 years) |
| Dizziness | “Just felt a little dizzy when I get up to do my little walks to exercise. It’ll be for like a day or so. So, it’s very weird. I don’t know what causes it. I just assumed it was the flare because I never really had it before.” (Male, aged 20–29 years) |
| Fever | “Sometimes, it’ll cause a fever, but not all the time.” (Female, aged 18–19 years) |
| Change in appetite | “You get more hungrier. I guess the body’s using more resources. But then you might just eat less, too.” (Male, aged 20–29 years) |
FOP fibrodysplasia ossificans progressiva