Does FOP hurt?

It doesn't hurt all the time. It does hurt during a flare-up . That's when FOP bones start to grow. A flare-up happens in one part of your body, let's say it's your arm. First you get a lesion. A lesion is a swelling under your skin. It can be as small as a coin or as big as your whole upper arm. The lesion may feel warm. It might hurt to touch it and when you move your arm. I find it more comfortable if I don't move too much when I have a flare-up. I spend more time in my beanbag chair and in bed. The pain from a flare-up can last for a couple of weeks or more. Then the lesion gets smaller and it usually stops hurting.

The FOP bone grows for about two months and after that you might feel a hard lump. Or maybe you won't be able to move your joint as wide as you could before. There isn't any medicine yet to stop FOP flare-ups, but there is medicine to keep it from hurting so much. Talk to your parents and your doctor. They can find medicine to make you more comfortable.

Sometimes people wonder if the weather affects FOP. Does it hurt more on rainy days, or when it's cold outside? Some diseases do hurt more in certain kinds of temperatures, but FOP isn't like that. People who have FOP might prefer warm, sunny weather just like anybody else, but FOP doesn't get more uncomfortable because it's rainy or cold.

 

Go the next chapter Will It Get Worse?

Go to the Youth Page