Hi nikmcjo,

Having RSD as a teenager really sucks. I'm not one any more but was diagnosed at 13 and remember it very well. I know it can be really isolating and often friends just don't really get it - and find it hard to understand why you sometimes can do something, sometimes can't, sometimes need crutches, sometimes can still join in etc etc.

I'm afraid I don't have any great advice to offer - except do NOT get an amputation. I've been down that road a couple of times and thankfully did not go ahead. It can make RSD a lot worse.

My only other advice is to keep talking - online, or elsewhere. I was not good at that as a teenager and RSD is difficult enough without handling it by yourself, especially when you are young. Find a couple of close friends that you really trust - I know it's really difficult to share the scary parts with other people but having someone who gets it and will pull you along when you feel like you just can't do it any more is really a good thing for RSD people! And keep talking to others with RSD who don't need any background explanation - we just know what you mean and you don't have to explain a thing! Keep venting about it while you work through treatments and flare ups and just regular every day life living with this thing. The mental battle is just as complicated as the physical battle.

Just wanted you to know there are other (ex)teens out there who really do understand how this feels - keep going.