Hello to you, I opened my computer...I pad whatever this thig is.......started reading here and just cried...still crying.....because everyone here understands what I have been through...well not exactly I know....but RSD!!! WOW does this hurt
I am sorry to people here that you hurt so bad. I know!
I survived 10 years without correct diagnosis. Nobody listened to me and I learned how to hide my pain after a couple years. So I worked as a home health nurse for the last 10 years. I should have known about this right? Well, i only had one patient that had RSD, and we were not given very much information about pain syndromes....hmmm wonder if DEA had anything to do with that....who knows. So no I did not know anything about a pain syndrome that causes cold extremities.....before they took the extra rib out my hand was turning ice cold and I was in horrible pain. Following surgery I was unable to do any PT. my surgeon called my PCP and told him no PT. so I just got stronger by my own means.......I was given pain medicine back then and it did help....some.
After 4 years and 2 rib removal surgeries I got myself better and went back to work....I had bills to pay.
I told many people my pain was bad, nobody listened.....I just thought (I had a birth defect) and I was always going to have pain.....just get on with my life.
My condition deteriorated over the last 10 years. I lost my family,friends, everything. It was like I had leprosy, nobody understood. Not even me. Until now.
A doctor in Houston (pain specialist) finally heard me and believed me and ordered some kind of block......he goes oh, you have CRPS type 2 and sent me home with new medicine. A patch, I put it on and in 2 hours later I was pain free for the first time in 10 years. That was the 27th. My 50th birthday was the next day June 28th. Birthday miracle I say! I cried the whole time....but tears of relief, happiness,joy.....like I cry now. OMG.......how did I survive that? I don't know
Sorry post so long...I just need to write this.....process in my brain what happened to me. I have tried to be brave, but there were times I just was so confused.....I did not know there was pain....and OMG PAIN.
I was saying I had bad pain.....right?
So sorry we are all here. I am just so relieved beyond belief, you just can't imagine the relief......after all this time.
I hate that the medical system changes the names around of things. They have been doing this a long time......
I think the reason I went undiagnosed for so long is that I had surgery to remove the rib....which stopped the progression of RSD. But I still had the pain part and nothing else. My hand does not get cold anymore, I don't have pseudo angina...or the profuse sweating. Only had the pain left after surgery. Which I was happy for a long time as I did get some better after surgery.
I do have allodynia and some other things and I told people about it along the way.....nobody believed me all that time.
Wow. Just wow. Thank you so much everyone here you all made me feel so much better this morning and I am NO LONGER ALONE! That is the most important part to me.
I hope I can be some help here to everyone and I will give support back as I know we all need that. I understand fully the suffering of RSD! Thanks guys.
