I’m 23 and and I live alone in Central Indiana. Recently, I’ve been feeling weak and having stabbing pains alongside my disease, and I had chills briefly the other night, but I think I’m better from that now, having Erythromelalgia really sucks in the sense that I feel so reliant on a fan or water constantly when flareups occur and then even when I’m slightly sick, I feel so hot and cold and uncomfortable and it feels like hell and I just in general I feel so weak compared to others. I often do a lot of moaning and groaning if I’m even just slightly sick.
I also hate that when I try to work out it gets so much worse and so it’s hard to get myself in shape because it triggers flareups. It’s also hard to eat healthy and to be active in general and then with this condition it makes it so much worse, but despite that, I do eat some healthy things sometimes, and I try to walk around the neighborhood sometimes every night, but not always every week in order to get a few thousand steps in at night, especially since I don’t have a job and I’m taking school online. I have some really good friends online that I talk to regularly, but in person, I have basically no one now besides family on holidays, as my parents passed away and I have no siblings. So I’m looking for community and support and resources and treatments and relatable experiences with this rare disease.