This is my first time ever posting to a forum. I felt this may be the best place to get guidance and let my emotions out to people who have and are going through the same things!

I just got my diagnosis a week ago. I am filled with so many emotions!!! A part of me is happy that finally all the puzzle pieces fit together and I don't feel crazy anymore. Another part of me is sad that there is no cure and I will be in pain for the rest of my life. Here is my story.

On Jan 8, 2010 my world got flipped upside down. I was at work and I started feeling real funny. My co-worker handed me a piece of paper and I couldn't read it. I felt dizzy and confused. My co-worker then rolled my chair into another office. I fell out of it and went into a seizure. The last thing I remember is being rolled into the office. I awoke in an ambulance and was very confused.

My left foot was twisted and it hurt real bad. I had these twitches and shakes in my left arm and leg. No one could touch my left leg or arm or it would hurt me real bad. I hated wearing clothes because they would hurt me. As the months went on I kept having seizures and my left foot would become more and more contorted. It finally stopped once it was completely sideways and facing my right ankle. It became stuck that way. I was unable to move it at all. I started losing weight due to the shakes and tremors. I went to doctor to doctor and most either thought I was some druggy or faking it. After it went on over a year I got a diagnosis of Conversion Disorder. So I went to therapy. I thought it couldn't hurt since I was depressed going through all this.

I couldn't drive anymore. I was in so much pain and I didn't want to do anything anymore. Even if I did want to go I would be wore out in just a few hours. I have lost most of my friends. None of them come to see me anymore. You would think I have some contagious disease or I guess I am just not that important anymore. To top it all off I couldn't work so I became a hermit.

While I was in therapy I decided to change all my doctors and go somewhere bigger even if it was an hour and a half away. I changed my primary care and my neurologist. They did so many tests on me and every thing would come back fine. My psychologist determined it wasn't conversion disorder. I had a primary care doc who finally listened and didn't think I was crazy but she was starting to run out of ideas. We finally decided to get my foot fixed because the pain of walking on it was becoming unbearable. This is when my life changed after waiting almost 3 years.

I went to foot surgeon that was 4 and a half hours away and he was going to put me in a ilizarov frame. However, when they put me under to do the surgery they could move my foot. So they hurried and cast it into place. When I awoke the pain of that cast on my leg was unbearable. My foot was trying to turn but the cast was keeping it in place. I kept crying in pain and no one could understand why that cast hurt me so bad. They brought in a pain specialist and finally I got all my answers. They ran some tests and I got diagnosed with CRPS. They ordered a nerve block. When I woke up for the first time my leg didn't kill me!!! I kept making people touch it because I couldn't believe it.

I am happy now I am vindicated and not crazy!!! My primary doc has never heard of CRPS and she had to be taught about it. Finally all the puzzle pieces actually fit. When they would say "It might be this" not all symptoms would add up. I would have some of them but not all of them. With this diagnosis everything matches up. However, I am now mixed with so many emotions. Reading about CRPS and finding there is no cure scares me. Knowing I am now going to be in pain for the rest of my life saddens me. I just don't know how to handle all these emotions of good and bad.

I thought maybe this is a good place to start. To hear from people recently diagnosed and how they are handling it. To hear from people who have been living with it for a long time and I want to hear how their quality of life is. None of my friends or family have ever heard of this and so they don't know what to say or do. I don't know what to say or do to be honest. How do you tell a family member? How do you describe it? I have so many questions.

Thank you all for hearing me out and listening to my story!

This forum is a good place to start. You can search the forum for various txs tried. U may want to search ketamine infusions and nerve blocks to start. Also the rsdsa and rsd hope have at lot info including support groups,,so take a look around and continue to post!

Debbie

Thank you! I have been searching for a thread of medicine or a group of medicine that may help me. They give me a nerve block for my leg but not my arm. I haven't seem to find a thread about medicine to help me get through this.

Hi, welcome to the CRPS gang! Sorry you have it, but I think we all get that weird mixture of relief and fear that the diagnosis brings...

I found the first six months or so a complete roller coaster of emotions with this, you might experience the stages of grief dealing with the long-term nature of this condition for some, the fear of the future and imagining a life of this pain is something I am going through a patch of myself... All I can say is that you will come through this and the rest, have good times and bad, and find a way to live your life as best you can. Good things don't end with CRPS, but you do have to get used to compromising on things.... One of my biggest issues is The Future and the cold fact that it isn't going to be what I had thought it would be. That's a toughie....I put things off thinking we could travel etc once the children had grown up, but now I feel that some thief has stolen it away and I have to come up with a new plan!

Read, research and educate yourself about this, and keep up with the latest papers published. Stay ahead of the game and never ever just accept what a doc tells you is best. I'm not saying there aren't some good ones, but so so many haven't got a clue, and most won't admit they don't know. You are your best hope, decide what treatment you want to try and why, and then discuss it with your doc. Be realistic tho, as managing this is often the best we can do once it has been around for a while. It doesn't mean you should give up trying new things tho, who knows what's around the corner?

I wish you all the luck in the world, and I hope you can find treatment that works for you very soon and get some relief Keep active in mind and body as much as you can, and find things that make you laugh....pets are great company and distraction

Bram.

lilbug

Welcome to neurotalk. Parts of your story is so familiar. I remember the emotional roller coaster, the feeling like no one believes you, the loose of friends, etc.

It is not easy, but you have come to the right place for support, friendship and an extended family. I am so glad to hear your block worked for you. That is awesome. I would recommend that you keep getting them, as long as they are working for you.

Good luck and keep us posted.
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Hi lil-bug! Sorry about your diagnosis. You have definitely come to the right place for info and support. I agree with alt in getting more nerve blocks. After I was first diagnosed (in 1991), I was treated very aggressively with a series of stellate ganglion nerve blocks and medication. This put me in remission for almost 13 years. I had minor flares in that time, but easily handled with meds. My spread began when I injured my hand in 2009. It took way too long for a correct diagnosis. Once I had the correct diagnosis, I wanted the nerve blocks again...they didn't help so much this go around because it was too late for me. If you felt relief from the first one, that is great! If it were me and I had that response from the first one, I would see about getting a full series of them...once per week.

Wishing you the best!
Nanc