Hello, I'm 24 and have had RSD for 6 years, though I'm blessed to have an incredibly mild case. (Sorry, this is so long. The last paragraph is a kind of summary of where I am now.)

I've never exactly been what you might call coordinated. I think my older brother got my share of grace and athletic ability as well as his own. Despite this, when my best friend invited me to go snowboarding for her 18th birthday I went. I'd never been snowboarding or skiing and new that I'd hurt myself, but I also knew that I'd have fun. I reasoned that we can't live our lives scared of getting hurt or we won't have any life at all (I mostly still agree with this).

As you can probably guess, I did get hurt. I've had a lot of practice falling down in my life (see above comment about my brother stealing my coordination) and mostly manage do it quite well, but at one point I fell to my knees and my right knee hit a hard patch of ice. It hurt like crazy, but I was fairly certain I'd only bruised the bone and not broken anything. I iced it overnight and stayed off the slopes the next day while my friend continued to barrel roll down the hills and received nary a scratch.

At my mother's insistence I went to the dr and he confirmed that I had bruised my kneecap. That was pretty much it for the next 6 months. My knee continued to be swollen and my pain didn't go away even a little bit. Most people would've gone back to the dr at least once in that time period and I admit that I should have too, but I didn't want to complain. See, my dad has lupus and has for most of his life. I know a lot of people with lupus who just sit around and do nothing because they hurt, but not my dad. He goes to work everyday (his job is very physical) and when he gets home he keeps moving and being physical until goes to bed. I reasoned that his pain was much worse than mine and I had no right to complain. I should also mention that this all occurred at a time when I hated myself and my long-term goal in life was suicide because I felt my existence only hurt those around me. (Don't worry, I'm better now. I feel neutral towards myself. )

So 6 months have hurting myself I went back to the dr. He sent me to an orthopedic specialist who proceeded to tell me that despite my inflammation there was nothing wrong with my leg and I was only faking it to try to get drugs. He admitted I was doing a thorough job because the muscles in my right leg were atrophied and sent me to physical therapy. I've never been a big fan of going to the dr, oh sure they're necessary, but you don't go unless there's something really wrong like you're arm fell off. So as you can imagine I was done with drs for awhile. I went to my physio because I've been raised with a lot of respect for the field and atrophy is never good, though I grumbled about it being a waste of money (my mom is a personal trainer and would have had me doing the same exercises anyway now that the atrophy had been brought to her attention). I do believe the physio helped, though it hurt and life continued. I graduated from high school--though I was in enough pain that I really don't remember much of my senior year--and got a summer job working in a factory.

That was horrible. It was great money, but I was on my feet most of the day lifting heavy things and being hit on. Everyday, I'd get home around 3 p.m. and go to bed. I just didn't have the energy to do anything else. And so I returned to the dr. He decided I had patellar something or other (forgive me, it was several years ago), basically the muscles and tendons on one side of my leg were stronger than on the other side and were pulling on my kneecap (though at this point most of my right leg hurt). He sent me back to physio.

As stated above, I strongly believe in physio, but first it's important to know what's wrong. This misdiagnosis and the treatment were bad news for me, largely because they decided to treat my pain with cryotherapy--in other words, lots of ice. Ice is not good for RSD. It's like treating an oil fire with water. I got worse and my RSD began to spread to my left leg. For the next couple years I continued to go to drs and they continued to play "pin the tail on the diagnosis". They, and I, dismissed the pain in my left leg as stress from babying my right though since my first round of physio I tried everything I could think of to stop babying it.

I did get lucky in one respect though. My depression had reached a sort of critical mass. I didn't want to do anything, I didn't even have the motivation to think of killing myself anymore. I was failing most of my college classes even though I'd always done well in school. After 8 years, I finally had to admit that I was depressed. (My mom had been telling me this for years, which is why you should always listen to your mother.) After an ineffective attempt to treat this biochemically and then a misbegotten stint on prozac, I was proscribed cymbalta. I believe this is the reason my RSD is still as mild as it is.

Still, being in pain all the time and not knowing why took a heavy toll on me. About two years ago I decided I only had one option. There was something severely wrong with my leg and no one could figure out what, but there was a simple solution. Get rid of the leg. I didn't want to cut it off, but I made my peace with it. I began to look into voluntary amputation and there was a light at the end of the tunnel. Just a little longer and I would be free. It wouldn't be an easy adjustment and my family and friends would never understand, but I wouldn't be in pain anymore. I could truly start to live again.

It isn't easy finding a dr who will not only agree to cut off what seems to be a perfectly healthy limb, but will do so quietly without alerting your father whose insurance your on and has worked at the local hospital longer than you've been alive. Without HIPAA it would have been impossible. Still I spent most of my workday scouring the internet. Then one morning I came into work to find the new issue of Time magazine on my desk waiting to be added to the system (I was working at a library at the time). The cover had the words "Understanding Pain" written across it in big red letters. I read the article hoping it would say something about voluntary amputation, but instead found the first description of RSD I had ever heard. (This was the March 7, 2011 issue if you want to read it.) It sounded a lot like what I was dealing with so I made an appointment with my dr.

And so, 4 and a half years after my initial injury I was finally diagnosed. I had told myself for a long time that if I only knew what was wrong I'd be happy. Just knowing was more important than treatment, but I can't explain what a blow my diagnosis was. For 4 years I'd put up with this. And just as I was losing the last vestiges of hope that I would ever not be in pain I had found an answer. So simple that I hadn't seen it at first, but my problems were about to disappear. I was going to be the happiest amputee in the world. And then all of that was ripped away. My dreams of a pain free life went up in invisible flames. I was crushed; crushed finer than the smallest grain of sand.

In addition to my longstanding battle with depression and the demon of RSD, I had to learn to cope with my guilt and confusion. I should be happy that my leg wasn't going to be amputated, but I wasn't. Luckily, humans are great at adapting and I did eventually.

So now I'm here. I'm 24. I have RSD in both legs from my thigh down to where it's just starting to spread into both ankles. I often get muscle spasms in my upper body (myoclonic seizures/jerks) as if I'm shivering and just can't stop. The only dr I've found who seems to know anything about RSD wants to torture me every 6 months with unnecessary EMG/NCV tests so I'm not really seeing a dr. I still struggle with depression, but am managing it most days. I'm trying to save up to go back to school and develop at least a grudging affection for myself.