Hello everyone, does anyone out there have CRPS in both feet? I had knee surgeries on both knees @ the first of this year and found myself with this horrible disease. It now trying to spread to my right hand. I have my first sympathetic nerve block on sept. 16th and I'm wanting to talk to others who understand what I am going through. Pain, depression, feeling like a burden to my family and husband....has anyone out there had these feelings? Thanks for listening!

I just wanted to welcome you to this wonderful forum!
I'm sorry the reason for being here tho
The good thing is that we all understand what you are going thru and everyone here is so supportive and caring.

I see you've been posting in the RSD/CRPS forum, so you are probably getting to know some of the wonderful folks there.
NT is like one big family and everyone is very down to earth.
Make yourself at home - you've got FRIENDS!

Caring
Rae

Everyone that I have talked with has been so kind and super understanding. RSD is such a strange disease to have...most people I know have never even heard of it. For that matter my own doctor had not heard of it!!!! My diagnosis was at least 6 months in because I had to figure out what I had on my own. Do you know of anyone else who had the the same problem with their doctor?? My ortho surgeon blew me off several times after my knee surgeries when I tried to tell him something was VERY wrong with my feet. Then, my PCP just shrugged her shoulders and told me to go back and talk to my ortho surgeon again. Sheesh...thank God I found all of you!! Thanks for your reply and listening to me whine.

My massage therapist told me he thought I had CRPS/RSD in my right leg because it was colder than my left and from my complaints to him. I went to my PCP and showed him both of my bluish/molted/reddish legs that occurs when I stand and described all my symptoms. The PCP measured my right thigh and said it was about 3/4 inch smaller than the left but felt that was within normal range of differences between sides. He told me that he didn't think I had RSD. So almost another 6 months goes by with a couple more times me mentioning to my PCP about my legs. Finally, I decided to show my pelvic pain specialist my legs and as soon as he looked at them he said to me, "You have CRPS in your legs. How long have you've been having these symptoms?" Then he said to me, I've got to get you into someone who can treat your legs this is not my area of expertise. So I don't think it is uncommon for it to take a while to get a diagnosis.

I'm starting to think that RSD is not something that doctors think to look for after a trauma, surgery, etc. Oh well, we just have to try to have a positive outlook and pray that at some point our lives can be somewhat "normal". What type of treatment have you had so far? Did your PCP send you to a Neurologist or a pain clinic? My neurologist gave up trying to "make me better" and sent me to get sympathetic nerve blocks and stronger medication. Hope you are having a good Saturday morning!

I know what you mean, Karen. I had the same problem. No one wanted to pay me the time of day - either because they didn't know about CRPS or perhaps your surgeon may be put on the defensive a bit because if we complain something is still wrong, then that some how reflects on him as a 'failed' surgery. As was the case with me. It's very frustrating and sometimes we have to weed thru several Dr's. Eventually, someone will come along and see this for what it is.

Has anyone mentioned anything about the SCS (spinal cord stimulator) ?
Just wondering. Alot of Dr's do these. I have one in my lumbar for the burning neuropathy pain in both legs. It sounds freaky I know. When all other treatments fail, this is sometimes considered, depending on whether or not Dr thinks you are a candidate

I hope you can start getting answers soon.
Let us know how the SNB injections go

Rae

I just got diagnosed with CRPS too. I know exactly how you feel.