Reflex Sympathetic Dystrophy Support Group

Hi there. I also have CRPS. I have it in my right foot, and have been dealing with it for about a year now. If I can tell you one thing to help you, it would be do not get anymore cortisone shots. The pain that it causes is rediculous and I never got any relief from it. I had a wonderful doctor for the first year after my injury. He retired in November and the doctor that I see now is a complete idiot. If your doctor is as bad as mine, do what I am doing. Request a new doctor. There are wonderful ones out there you just have to hang in there until you find them. Please stay in touch and I will do the same. I hope you feel better.

I have never had cortisone shots only blocks and trigger point injections. But I do know that RSD does cause degeneration to affective area. Example I started out with a broken ankle, the RSD affected that area and the bone,ostoporosis (spelling?). I fell on my left shoulder/arm when I broke my ankle and the RSD is in the shoulder and arm, I have degeneration in the shoulder and C-spine. In the left leg nothing happened to it but I have mirror RSD in it. What kind of accident did you have? RSD can spread, and I know you will have idiot Drs that dont know crap about RSD they are pain managment Drs and they can make you feel like you are losing your mind.Even the experts cant agree! Find another DR and interview them!!! Bring in your research and your experience, and if they dont feel right in your spirit fire them and do another interview NEXT!!!! I had one Dr do botox in my leg (wanted the extra in my face but he wouldn't do it, if your in pain your face shouldn't have to pay the price too)Botox worked I had better range of motion and I was able to walk on my leg and I actually leaped/ leped whatever the spelling I did it! I went back to another dr wanted Botox in my shoulder/arm and he said Botox doesn't work! It did on me! he didn't want to hear what I said. Oh best time I saw a new Dr He walked in spent 2 minutes with me then his cell rang then talked to who ever glanced at my records and said you don't have RSD! Now I have tried to find a DR that would say oh its not RSD its this but after 6 years no such existed. So I asked him what he thought I had and he said he didn't know but its not RSD, without looking deeply into my records, testing, treatments etc... but then he said I will treat you as though you have it! Wow!! Amazed me!! Fired him!!! RSD treatment is not a sure fire thing for everone, somethings work for some and not for others, try it all until you find what works for you! Don't give up! Prayer are with you...

Hello Mother of many. Ok so here is my story. Back in 2007 I broke my ankle on both sides and had surgury to put in assorted plates and screws. After I got out of my cast I went thru physical therapy and was able to go back to work for about two weeks when I got up one night and it felt like I had stepped into a vice of large nails. That is when I was diagnosed with CRPS. I no longer walk on that leg. I went thru 3 nerve blocks, but never got enough relief from them to consider any more. The first Doctor I had was fantastic, but he retired late last yeat and I was given this new one. In the last 6 weeks I have been having alot of trouble getting up from a sitting position. My knee on my good leg hurts so badly when I try to stand up on one leg. So last weekend I fell while trying to stand up and thought I had broken a toe. The xrays were negative, as were the ones they did of my knee. I am alone all day and I only sleep about 2 hours a day. Luckily this time my husband was home when I fell, but now I am afraid of what could happen if I fall again. I told all of this to my doctor and asked her if she would request a lift chair for me from workmans comp. She proceeded to tell me that she has spinal cord injury patients as well as patients with no legs and they don't ask for lift chairs. I was so angry when I left that I was in tears. I went right to the nurses desk and asked for the name of the person that I would need to talk to to request a new doctor. Now, after much thought, I have decided to keep my next appointment with her so that she can hear from me why she will be replaced. I hope she learns something from it. I don't really think that the insurance company will cover the chair, but all that they can do is say no right. I hope that you are having a good day today, and that you will write again.

I fractured my ankle bout 9 yrs ago, A orthapedic doc told me I have crps type 1 Ive tried steroid tablets they helped but they are not long term medication, Ive had a cortisone injection too and I cried my eyes out while he was doing it so he only gave me half it didnt help my pain though, then I seen him again and hes telling me bout a 9 yr old boy with bone cancer WTF has that got to do with me??? so I stopped seeing him, Alot of doctors have told me that I will always have pain,
I have tried hydrotharapy recently but It has helped much either,
The doc Im seeing at the moment rekons I have arthritis and put me on some anti- inflammitry tablets they didnt help either, Ive had enough of doctors Ive tried alot of different medications and Im starting to wonder why I even bother seeing them, they dont seem to be listening and just make you feel even worse,
I dont know what to say to make you feel better because until doctors start listening to us we will always have pain, I havnt found a good doctor yet but I hope one day we all do...

G'day, I have RSD that started in my right foot/ankle and is now in all limbs. I was given a cortisone injection when it first started to spread and it was the most painful thing ever...it also did nothing to help the pain or stop the spread...I have never heard of anyone being successfully treated for RSD with cortisone, I would suggest doing some research about treatments out there that have had success (at least with some patients, people tend to react differently) and then take your research to the doctor and tell him what you want. Unfortunately, the doctors just don't understand this condition well enough and tend to put us all through hell while they pretend to know what they're talking about!!
Hope it turns out OK :)

Hello Stargazer,

Thank you for your thoughts. I too have been told that I will always have this pain. Today I am calling to ask for another doctor. I was going to keep my appointment with the one I am having so much trouble with, but yesterday I got a copy of a letter she sent to my workmans comp insurance. It simply says that she recommended that I get a walker. Which she did, but as I told her I don't need a walker. I get around on my krutches at home. What I need is help standing up. So anyway I am done with her and her spinal cord patients that have nothing to do with me. I hope you and I both are able to find doctors that treat us as individuals and find some way to ease our pain. No one deserves to live like this. Keep your chin up.

Gipson