I am 31 years old and was diagnosed with Adult Onset Stills Disease two years ago, just before I got married. I don't think I have as hard a time as other people with AOSD in terms of the stiff joints, but I do feel pain in my arms and shoulders a lot, which is hard as I had a baby 10 months ago and some days I can't pick her up as it hurts too much. But we get through somehow, I think she understands even at her early age that mummy isn't that capable some days and she just has to entertain herself. My main issue is that I get a rash all over my body every evening which is incredibly ugly, so no matter how warm it is, I'm completely covered up as I just can't cope with the stares. I feel like a vampire ! My skin is also very itchy throughout the day, I permanently feel like ants are biting me. I don't take medication as prednisalone had no effect on the rash and the joints are bearable with ibuprofen. I'm trying for a second child so I don't want to take the other options available yet.
I'd really like to connect with other people with AOSD, there are so few of us and I do feel like an outcast with it. It's hard when even the closest people to you can't understand. The lack of central information about this disease is so frustrating, so it would be great to hear about other people's experiences.
So if anyone out there can relate to that, please get in touch!