New to CRPS complex regional paint syndrome: want to talk

Hi everyone. I am reposting a comment I made recently for hopes that those who are seeking more in-depth understanding with CRPS have the resources they need. Remember though, not all people will get all the symptoms described in these articles, they are good guidelines of what things could look like and signs to look out for.

Google Medscape and CRPS, account sign-up is free. Search CRPS. Articles are high quality.

Copy and paste to Google: An-Update-on-the-Pathophysiology-of-Complex

Typically I search for things in the past five years for medical journals. Google peer-reviewed CRPS. Click scholarly articles peer-reviewed CRPS. You can search by years for how back you want your search to go. Using keyword searching with quotations, minus signs, or the word and, you can pinpoint what you really want to find and what you want to hide from your searches. Hopefully the articles above increase understanding and help anyone who would like to know more in-depth. I'm no expert, but I read a lot into this disorder because it drives me crazy, but I feel educating myself thoroughly I can then communicate effectively with physicians.

Another good site search: Google (redundant, sorry) warm and cold crps

Hope everyone has a great weekend!

Hi T2020.My name is Darryl. I have ha CRPS for a little over a year. Mine started with fall that shattered elbow. A year ago they had to remove all of the screws and plates. After second surgery the severe pain would not go away. Diagnost with CRPS from elbow to finger tips. In last 3 months CRPS has expanded up to side of my face. I , just this week, have been approved by my orthopedict surgeon to do a trial of a spinal stimulaor. I've been told that it will take about a month for the insurence to approve. After that I will do trial and if get 50 to 60 pecent pain relief will have permanent put in. In the mean time I am using Buprenorphine patches. Used for drug addicts. I started with 10 mcg and now on 15mcg/hour. It is helping a good bit except when I use arm to much.Maybe you shoul try. Good luck.

Thanks Darryl , I am going to look into Buprenophine. I have been going to UPenn pain management and have tried few different drugs, with no good results. So far no doctor has helped, I find my own meditation and positive thoughts have done more than any medicine but I will always keep open to new ideas. This is not how I saw my life going, I just want to take a walk without total pain. The search continues

I have CRPS in my left leg/foot. Had a Boston Scientific spinal cord stimulator implanted on 3/14/2022. Very happy I did it. It took about 90 days for the swelling to go down and that’s when I got the greatest relief. Had a temporary one in first but the battery was on the outside. The relief was fabulous. So, keep this in mind when you get yours. Follow the directions. I was not allowed to bend, lift, twist or raise my arms over my head for 90 days. Well worth the wait! I have to be very careful until 12/14. I use a pool for water workouts and walk a lot. Bottom line…get up and move after the implant.

I wish you the best!

I was diagnosed with CRPS about 4 years ago. What do you fellows do for pain relief?

Hi @finny4606, you will notice that we moved your post to an existing discussion on the same topic link below so that you can learn what others members like @chuck406 @drg24242 @grannyzoo @sprinrosa64 and others have shared that helps with pain relief. If you click the link below it will take you to the beginning of the discussion:

--- New to CRPS complex regional paint syndrome: want to talk: https://connect.mayoclinic.org/discussion/crps-complex-regional-pain-syndrome/ .

You also might also find this discussion helpful:
CRPS - anyone suffering with complex regional pain syndrome: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

I have CRPS that started in my left foot and has now moved over into my right leg and foot. I’m encouraging you to contact an anesthesiologist that specializes in pain management. I went the route having spinal cord implant through Boston Scientific. My recommendation is that you go see the specialist and talk to them about what your future holds. I contacted the mayo clinic down in Jacksonville Florida, and they gave me these guidelines after I had spoke with one of the nurses who sent me to the Neurologist department. I found my neurologist at the University of North Carolina, and they were absolutely fabulous. Insurance made me go to the route of taking gabapentin. And injections for pain. Neither one worked. I was given the option of numerous spinal cord implants and after doing a thorough study on them my husband and I decided the best route to go was Boston Scientific. Please don’t get discouraged with this disease. Just keep pushing forward to find your answers. Every doctor out there is going to tell you to stay off the website. My advice to you is to stay on the websites. I discovered that numerous neurologist are clueless about this disease. If you’re anywhere remotely close to the mayo clinic, my suggestion would be you make an appointment with them. Also go to “teaching” hospitals to find your physician.

Best of luck to you.

How did you feel my the doctor in N Carolina?

Sorry, I meant to say: How did you find the dr in N Carolina? I’m searching for Dr who knows CRPS inside out.

After searching the web (being my own advocate) I ended up calling the mayo clinic in Jacksonville Florida. I asked for a nurse that could guide me to find out what department I needed to go to. I ended up in the Neurology department down there and that man said to me, you’ve got help in your own backyard. Go to the University Of North Carolina. As far as somebody that understands CRPS inside and out, my suggestion would be that you start at the mayo clinic. As you have figured out, I am sure, this disease is not very well known. Please, do not give up! Continue your search until you can find someone that can help you.