CRPS - anyone suffering with complex regional pain syndrome

Sorry couldn’t respond quicker, had little trouble logging in. My psychiatric doctor switched me over from Wellbutrin to Cymbalta when I was diagnosed with CRPS in 2015. Cymbalta has the advantage of also helping to address nerve pain in addition to depression. Of course each of us can interact with medicines and treatments differently, but I have been able to tolerate it. Feedback from the many, many doctors I have visited re: amputation is “don’t do it.” Can make your CRPS much, much worse. (My CRPS was a result of a right ankle fracture that went bad.) I also participate in 2 other on-line sites specifically for CRPS that have found helpful. One is out of the U.K., but has folks all over the globe sharing (6,000+ members). As new symptoms emerge, it has helped me so much to share and see if others have experienced the same. The other is a national group out of Connecticut. Here are sites if you’re interested (Justin, hope it’s o.k. to share.) http://www.crpscommunity.co.uk and RSD/CRPS Friends in Pain (org is Reflex Sympathetic Dystrophy-A Place for Support-Stop the Burn. May you have a low pain day.

I have retractable CRPS in my left foot and ankle getting much worse with age (I'm 63). It's so bad at times I would amputate if I was certain it would take all the pain away but I've read sometimes it doesn't. I have been desperately looking for someone to consider cutting the nerves to the area rather than amputate but have had little success finding a doctor to help. Would you please tell me who you used. I tried to send a private link but the site won't allow it since I'm newly registered. I'll keep checking back here in hopes you will respond. Thanks so much, Jimmy

My Dr is in RI. He has cute 3 of my nerves. 2 were successful. He would like to go back in and cut the nerve again. I am in stadge 3. The tissue in my leg is now detariating which makes surgery hard.

Dr Tabaddor. He is very knowledgeable with CRPS. He has helped me alot

Thank you so much for responding with your Dr's name. Please tell me his first name for Google search shows a Ramin and a Kamran Tabbador. Thanks, Jimmy

I do. My name is Samantha. I have Reflex Neurovascular Dystrophy - its simaler, and right now I am being managed through gabapentin to help with overactive nerve issues. Mainly it was caused by an accident. So far, there is nothing for me to do - and there is no treatment for me because I have a massive concussion two years ago, and I was diagnosed nearly 6 months later.

Hi, I too have the ‘shockers or bolts’. I have noticed that if I up my Pregablin x250 gms, that’s one extra pill a day, then the shocks are more intense so I am wondering if it is the Pregablin that are the cause. I must mention this to my pain doctor when I see him. I haven’t seen him for 3 years but I have only recently made the connection when on a few occasions when I had to take an extra pill at night and I had a few very bad shocks. I felt as though my whole body had jerked if that makes sense.

I broke my ankle in April 2017. It healed quickly but pt wasn't working foot was worse then b4. I lucked out my orthopedic doctor knew another dr. That dealt with complex regional pain syndrome. I tried gabapentin, it didn't work. Got a nerve blocker, and that worked. Unfortunately it spread to my arm and I had 2 nerve blockers. They didn't work. I ended up getting a spinal stimulator, and it was like magic, I woke up to a normal arm and hand. Unfortunately it spread to my other arm. But my doctor put in two leads because of the fast spreading, and we were able to turn it on that arm is good. But again it's spread to a part of my spine that cant b reached by adding g more leads. I'm looking for alternative sources. I'd love 2 talk to anyone who has this very disabling disorder!!!

Struggling with CRPS x 23! Years. Have no answer.. can’t afford my Med . Tried cold turkey and boy do I need an oven now.!Also taking supplements which are expensive as heck, but trying to get off meds which are slowly killing me.! I love some help.

I've gotten books on the disorder I ordered it from barnes and noble, it's called" Positve options for complex regional pain syndrome " by:ElenaJurjis. It's excellent! It gives a lot of medication options, acupuncture several different kinds and treatments. I'm basically trying anything. I already have a upper stimulator, but if it goes into my legs I have no problem going through the surgery again. I was afraid, and my pain is all day. The book talks about therapists who only deal with pain management and know what c.r.p.s.is when you find someone. I had like 5 doctors I go to even after the surgery tried to give me oxycodone for the pain.....they don't get no matter what my brain will continue 2 send these pain out...its not an injury that will ever heal. They say " cbc" lotion on the pain spot might help. Last thing don't give up...it might take a while, but u need to dr. That knows what it is..and a lot of trial and error. Feel free to write back ...I'm always online looking 4 new things that might help.