NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Rsd? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/41937-rsd.html)

Debby pretty much explained where I am at with mine now. If I let my hands swing as I walk though they get cold and pinkish red and swell.

I am having the same problems with my legs as you are. I get the electrical shocks and they are cold. No matter what I put on or cover up with my legs feel ice cold. I am having trouble wearing jeans now but also even some stretch pants.

My thought would be to find a Dr. that specializes in RSD or knows enough about it that they can say you have it. Also, you might ask your Drs. to have a block done on you. They do use them to help with the diagnoses of RSD and it might help put some of the pain into remission. I feel some of the best to deal with blocks are Anesteologist. I don't have much use for PM's even though some on here have good ones in their areas.

Good luck and welcome to the group. I hope you start getting some of the pain under control really soon.

Ada

Thanks for the advice. Im looking to switch my treating drs with work comp, however, its a long process. Im on top of trying to get this thing diagnosed for sure. The lyrica is really helping, but the pain is still there. As soon as I know something I will keep you posted.
Im having really bad memory issues lately and its hard to concentrate.. blah!

Thanks,
Shannon

Quote:

Originally Posted by kahmasayshi3 (Post 243990)

Thank you all so much for your words of wisdom and support. I saw the physical medicine dr today and she said she wasnt sure if it was rsd because i dont have the barely touch pain, or pain when she barely blew on my leg. But Ive got the bad pain, especially over my incision site and below it. My foot turned a deep red while i was in there and she seemed torn over rsd and leaned more towards sapheanous sp? nerve injury from surgery. After reading everything about rsd and the swelling that stops abrubtly, im pretty sure rsd is the culprit, but of course im no dr, so who knows. She did prescribe me lyrica and she is looking to get me an mri and a tens unit for the pain.
Can rsd be diagnosed if you dont have the hypersensitivity to clothing or air blowing on your skin? I have the pain when she touched, moved, and examined, but she was unsure about the rsd..
well, at least with the nerve pain meds I know i am on the right track. .. Even if it turns out i get the dx rsd a little later than expected.

Any thoughts?
Thanks much
Shannon

Hi Shannon
I'm a little late to this thread. My husband also developed rsd after a medial menisectomy in 6/05. He does not have the sensitivity to touch either. Never had it. Does have pain, redness and temperature changes. He started taking neurontin which helped immediately. Most of the pain management docs he's seen believe he has rsd. Dr. Oaklander, in Boston, however thought it was more likely the saphenous nerve.

I wish you luck in finding a combination of treatment that helps you get your life back to functioning and pain free.

I live in Iowa I had to be an idiot to move here , the med drs here are like
glorified vets, its rediculious and the arrogance is unbelieveable dont get me wrong im sure there are great docs somewhere in Iowa i just havent found any
i used to live in mn and the docs there really know their stuff
all i can recommend is get a doc that knows rsd and works with it on a regular basis, then you know your getting the best care ,as for me im
moving back to mn, when i took myself to the docs here they acted confused & just scratched their heads , there is more than just taking pain meds all your life there has to be
signed
december

December, sorry that you have to go through putting up with stupid drs. There must be more than taking pain pills and acting like a zombie all day, right? I would hope so for gods sake. Its getting old, however, I believe I have a life long left of pain pill taking.

Shan

Just a quick update. I have an EMG scheduled for next wed. Im a bit apprehenisve about it because Ive heard its painful. I found out my request for changing treating drs has been approved! Yippe, this new dr said he was going to send me to an RSD specialist who would give me more tests for RSD. So im on a good track now, except I still have to get this darn emg done with the dr who believes it is a nerve irritation because I didnt pass the "blow test". Anywho-just wanted to get everyone's experience with the emg.

Thanks,
Shan

I live in Colorado and I thought we had the worst pain Drs. LOL I have seen at least 5. 3 at the U of C and the one I thought might be good switched to another dept. before we could continue treatment. They then hired this arrogant Dr. from Kansas which was a big joke and so were the understudies. I saw 2 in Colorado Springs and I won't mention the other due to close to home but he loves giving out pain pills and doing surgeries.

My PCP finally got tired of them using me for a guenna pig and took over my care. He has done a lot of research to do it. His goal was to keep me from living on pain meds, since I can't take them, his task has been even easier on that part.

I have yet to see anyone around here that has been helped to get better. They are on so many pain meds that they can't get out of bed most of the time. I don't want to live like that, who does?

I don't understand these PM Drs. for not trying to get someone better except for the kickbacks and gifts they get to hand out meds.

Ada

Just wanted to update all on my drs visit. I went to see my new treating dr and he said that he believes I have rsd and he is referring me to a new ortho and a pain mgmt dr to get my pain under control. He also took xrays and showed me that my patella on my rsd knee was rubbing bones with my leg. He said it was a mechanical issue as well as the rsd and he said that my right knee is way out of alignment. So thats no good, i thought I was only having nerve pain issues, not actual mechanical issues with my left after surgery. I asked him about the nerve irritation dx that the physical medicine dr gave me and he said that discoloration isnt normal with an irritation only with rsd. So now Im set for an emg on wed, yuck, two new drs ,a bone scan, and whatever else they figure out along the way.

Shan

Hi Debbie!!
I am so sorry that your in pain. From the looks of it, what you described also, it sure looks like RSD. Ada, are you back from remission? Did RSD get you again? ~ Love, Desi

I fell last week on my right side and that's my worst side otherwise I am doing good on the RSD part. I started getting TPI's again awhile back when it started coming out again. I do ok if I don't screw myself up.

I have another cat scan Monday to see what's going on with my lumbar spine, we couldn't get an MRI done due to the implant in me so he's hoping it will show enough.

I also see another specialist on the 23rd for the pelvic pain. We have yet to find one that can help me with that but I am in hopes that this one will.

All of the idiot Drs. I saw were when I first got RSD and finally got fed up with trying to find a good PM Dr.

Ada