Newbie -Need ATL Dr. - RSD Upper Body FIRE!
 

Hi everyone - So happy to have found my tribe! Long story short my fabulous pain doctor at Emory Pain Center in ATL retired (horror of horrors) and I need any recommendations for a new one. If this forum doesn't allow this can you message me?

A little about me.... I have had RSD in my lower body for 10 years - started with a stress fracture in left foot and spread from there to both sides and up my legs. That's it - no major trauma, no surgery, no fiery darts or swords. It stabilized for 5 years. I must have done too much yoga one week and it flared up this August the point I could not put my feet on the floor to walk for weeks and now.... the first week of November decided to WOO HOO start to spread to my ENTIRE UPPER BODY. Talking even my scalp at this point. Face, neck, ears, chest,stomach, arms, back....... (can you tell I use humor to offset the sobbing?)

You know the drill - cold spots, hot spots - don't touch me with the sheet, shirt, wind or shower spots. I am currently only on gabapentin and I am DYING. One new doctor I saw -that had all the right credentials -looked at me and shook his/her head about what to do on the lower body flare up. Literally. That gave me a lot of confidence in their abilities to help me. Therefore, just reaching out to see what you may think on Dr. rec's.

So, new doctor referrals? And, I've never had this fire and brimstone/cryogenic freezing burning and uber sensitive feeling on 60% of my skin before 22 hours a day - what do you all take for it because gabapentin is not the antidote for me. ?

Wishing you all comfort, sanity and even temperatures - :)

Low Dose Naltrexone. Beg a doctor for it. Do whatever you can to get it. I believe I would not be walking today if t was not for LDN.

Hello and Welcome Bulldawg,

I am so sorry to hear of you worsening, and after yoga of all things!

Have you been able to do any kind of PT or aqua therapy since then? Time in a pool has been a lifesaver for so many of us. I have also found acupuncture helpful, though of course it is not for everyone. Topical meds can be good too. For me ketamine has made a huge difference.

I hope you are able to find a good, knowledgeable doctor you like as well as the last one. Here is a list of doctors compiled by RSDSA as having an interest and desire to treat CRPS.

http://www.thblack.com/links/RSD/All...ctors-list.pdf

I hope you get relief soon and are able to beat this thing back!
Sending hugs and healing love, :hug:

Hey bulldawg :)
 

I'm so glad to hear you had good results with it. I literally just started it yesterday. I hope it helps my old RSD in my legs/feet and the brand new burning all over my upper body. How long did it take for it to 'kick in' for you if you don't mind me asking?

Thank you for the pdf list and links!. My retired Dr. is actually still on that list - so sad. She was wonderful. I will certainly call a few of the others. I haven't been able to get to the doctor for ketamine cream and my upper body skin is so sensitive I can't even stand the thought of a pool because of the bathing suit or even a wet tshirt on my skin. But I did love using the pool for my lower body RSD. Hopefully if this ever calms down I can go back to using the pool at the gym. So appreciative for the help, off to do some more Dr research and feeling the love!

It wasn't long-within two weeks or so. I could drag myself upstairs and I had more energy. Pool therapy combined with the LDN helped. Also I kept using my seated elliptical and pushing my feet on the WonderCore.

I think we have to try various approaches based on our individual situations. I am convinced that getting the swelling down with the Bowen Technique helped increase the circulation in my right leg. I gave up using any kind of pressure, because I thought it could potentially be damaging the delicate lymph vessels ; preventing them from doing their jobs. ( The PT I saw did not understand that my leg turning red was a bad thing, she thought it indicated increased circulation-I gave up telling her it was a sign of blood pooling. With CRPS you have to be hyper aware of your peculiar signs and needs-I pretty much figured out I was on my own)