Hi everyone: My daughter who is 30 was diagnosed with RSd during pregnancy. We have been fighting it ever since without much success. I basically spend my life online when I have time and with her and the baby to help out after work and also taking her for nerve blocks and already a ketamine infusions (all not very successful). Then, I thought, I suffered the most horrendous migraines all my life and it seems Topomax helps me deal with them. So, I typed in Topomax and RSD and wouldn't you know, some people are using it. What I don't understand is why I seem to have to do all the research. Her RSD specialist never seems to give any suggestions except for nerve blocks and ketamine infusions or wanting to put in a spinal chord stimulator. I feel really frustrated because I feel my daughter is not at the point where she needs to have a stimulator implanted yet. Today, I decided to join the forum which I have been reading for a few months (always very informative, thank you to all of you). She is taking cymbalta and lyrica and doesn't seem to get any relief from it. I am afraid the RSD is moving around in her body, kind of jumping around (is that possible?). It started in her right foot, then jumped in the left, got better, went into the left arm, got better, then back in the right foot, and now possibly in her right arm. OK, I don't want to overwhelm everyone with my story. Just wanted to know if I should look into topomax to help her.

It isnt uncommon for RSD to jump around,,,It will mirror the other side of the body as well,,your not imagining things,,,RSD does pop up in other parts of the body,especially when they are being used,,like shoulders,elbows,ects,,then when you bay them,,it seems to clear up a little,,,,yes maam,,,I think youve got it right,,,,and your correct with the DR's wanting to do conveyor belt treatment,,,,,,I feel for you and your daughter,,Prayers will be lifted up for you 2nite,,,,,,,bobber

Welcome to NT


There's lots of info here. I find new forums to look at here all the time. Did you look at the caregivers forum? Here's the link. http://neurotalk.psychcentral.com/forum56.html

It's hard to watch a loved one suffer... even painful at times. My heart goes out to you both. It's good you have each other.


SCS forum: http://neurotalk.psychcentral.com/forum118.html

There's just so much info from so many amazing people. It's a great place to research to get info and a great place to give help to others who are searching for RELIEF.

Hello, and welcome to NT! This is such a great place with so many caring, friendly, and helpful people.

We're so glad you found us!

I know I will get a lot of help from this community. Thank you for taking the time to read my post. Sorry it takes me a while to answer. I don't have much time to get online, but I do appreciate all the help I can get. Now, I was wondering what Maryann means with I began Tysabri??? You seem so happy about it. Also, I don't speak computer language, so I spell out all my words, sorry. Thanks for the links, I will check them out. What about the Topomax, nobody answered my questions about it. Anyone getting relief from it. Bobber, if you say, RSD moves in other parts of the body when they are being used, which is what she is doing, are you saying she needs to stop working?? Isn't it better to force your body to continue using your limbs? Thank you for your prayers.

ok, Maryann, never mind my dumb question, I now know what Tysabri is. I wish you the best of luck. By the way, I love you dog and your family is wonderful.

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help.

Again welcome, looking forward to seeing you around.

Darlene

Yesterday, I took my daugther to have a lumbar nerve block for her original right RSD foot, but for the first time she had a bad reaction to it: her face swelled up, her vision became very blurry and her body started shaking, probably an allergic reaction. However, according to the nurse, no new medicine had been used! What does this mean? they wouldn't tell me much. Also, the specialist told her that everytime she needs dental work she has to have a ganglion block done first. Is this what everyone does? I mean, these blocks are very expensive and invasive. I tried to research RSD and dental work but couldn't find much about it. Can anyone help me with this? Thank you

Hello and Welcome!!!

Here is the link to our Dentistry & Dental Issues Forum:
http://neurotalk.psychcentral.com/forum89.html

Here is the link to our Reflex Sympathetic Dystrophy (RSD & CRPS) Forum:
http://neurotalk.psychcentral.com/forum21.html

I too have RSD and understand your fears.
I recently had to have a root canal. I was/am fortunate that my dentist was already aware and well educated about RSD.

I did not have to have a block.

RSD does affect my mouth but it doesn't feel any different today than before the dental work.

I would suggest talking with your daughters dentist... He/she may know about RSD if not... you may need to "educate" him/her.

I wish you and your daughter the best.

Abbie