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.

Hey

I developed this when I was 16 and so I also know what it's like to live with this as a teen - it is very difficult, but manageable.

I have been lucky to have the most awesome mates ever who don't care about the wheelchair/ the care I need etc. They can tell when my pain is getting bad and insist on me resting for a couple of minutes. They don't mind me cancelling them or saying that I'm not up to going out of the house - instead they grab popcorn and movies and come over to mine.

the hardest I have found is keeping up with everyone without flaring and with the level of pain- I used to do everything my mates did and then crash for a week or two in a flare. So I started to choose which activies were most importantly to me but that left me enough time for resting etc. (also my mum instigated a rule that either I was home by midnight or I slept in my wheelchair!).

However - hang on in there and things hopefully will improve!!

Take Care

rosie xxxxxxxx

Hello. Great thread. Sorry I haven't said "hi" and welcome here yet.

I wanted to say that you are not alone.

What smtac and Heidi said is great- keep on talking to others with RSD. You can find many yahoo groups, message boards, etc... It helps to talk to others who KNOW. I know how much it has helped me. There are people who understand EXACTLY what you are going through.

I am also a teen with RSD. It is hard, but we're gonna get through it!!! Sending many gentle ((hugs)) to you.


Good posts, everyone! You have really encouraged me. I liked your post, Hubby (HubbyWithRSD)...

Hang in there everyone!

I'll add my two cents - I was diagnosed at 14, and it's really hard, especially if, like me (and you, it sounds like), you were really active physically, and now it hurts to do so much of what was once normal.

For the record - I've had nerve blocks and epidurals. Sometimes such things give relief, sometimes they don't. I had 3 different nerve blocks and 2 epidurals. In my case, the blocks gave me relief for about 2 days each. The epidurals didn't even last that long. That doesn't mean such things shouldn't be done, because any relief is a good thing, and because they don't have a lot of side effects (actually, I don't know of any - does anyone else?).

I would say - listen to your doctor, but do some research yourself. Many doctors just don't know a lot about RSDS/CRPS, so make sure you learn as much as you can, and if your doctor says something that doesn't make sense to you, ASK QUESTIONS! No matter how old you are, it is YOUR BODY, and you have the right to know EXACTLY what they're doing, EXACTLY why they're doing it, and EXACTLY what it is supposed to do. One of the things that anyone on this board will tell you is that you (and your parents) have to be your own advocate.

Best to you, and know that you've found friends here.