CRPS - anyone suffering with complex regional pain syndrome

I shattered my elbow on 2/14/21. Six hour surgery to repair on 2/16/21. Dr. had to insert 12 screws and 2 metal plates. Very painfull PT summer and fall 2021. On Narco for pain releaf. Second surgery for elbow 2/18/22. Pain much worse after 2nd surgery. Hand and wrist started swelling. 4/1/22 seggion diagnost me with CRPD. My pain DR. has had me on gabapentin 800mg. 3 times a day and several opiods but still in severe pain. I have not slept more tha 2 hours in a given night since March 10th. On 6/11/22 CRPD went from just being from elbow to finger tips to now totally knumb all the way up arm to entire left side of face and in last 2 weeks it has started impairing my vision of left eye. ER told me no stroke but CRPD expanding. I can not find any expert in Pittsburgh, Pa. area that will accept my Medicare insurence. Any idea's? I need Help! Darryl

On 2/14/21 I had a bad fall and shattered my elbow. The sergeon had to use 12 screws and 2 metal plates to put it together. Received painfull PT until 9/1/21. Used Gabapentin 800mg. 3x per day and Narco 3x per day. On 2/19/22 I had 2nd surgery on elbow. After this surgery my wrist and hand swelled badly. Servere pain up to elbow. On 4/1/22 my sergeon diagnost me with CRPD. Continued with Gabapentin 800mg and tried several different opiolds. I have not slept more than 2 hours per night since 3/1/22. On 6/11/22, in the middle of the night, i suddenly felt the pain going up my arm covering half mouth, side of face and all the way up covering half of my eye. I went to ER thinking that I may of had a stroke but that was ruled out and told that it was my CRPD expanding but no Dr.'s there could treat. I've been looking all over the Pittsburgh PA. area but can not find a specialist that treats CRPD and takes my medicare insurence In the last 10 days my eye sight has startyed to be effected. Please help! I don't where to turn. Darryl

Find an anesthesiologist that specializes in pain management. I am not sure if UPMC has anyone that is knowledgeable in CRPS.

First of all, thank you for replying to my posting. I will take your advice and call UPMC customer service and see if they can give the name of an anesthesiologist that specializes in pain management. I will ask if they have anyone that has knowledge in CRPS. I'm not sure how I would get to an appointment but I will cross that bridge if it comes to it. Thank's again. Darryl

I was just looking online at the Cleveland clinic. Apparently they have recently taken five new different approaches to CRPS. They are approximately two hours from Pittsburgh but it might be a spot that you would want to check into. I would check with their “nurse on call” and go from there. They could possibly give you the name of someone in Pittsburgh area that could help you. The other thing that I did, and it just might have been a stroke of luck, was I contacted the Mayo clinic in Jacksonville, Florida. I asked to speak with someone knowledgeable of CRPS. (I was desperate!) They are the ones that directed me to my physician at the University of North Carolina. Take a shot and give them a phone call and ask them if they know if anyone up in the Pittsburgh area that could guide you. What have you got to lose? I wish you the best of luck! This disease is nasty. My prayer for you is that you get as lucky as I have with my spinal cord implant! The key thing I learned was I needed an anesthesiologist that specializes in pain management. Don’t forget you have AGH. They are excellent, too! (Obviously, I’m originally from Pittsburgh and Cleveland. I’d start with UPMC and AGH. If all else fails move to Raleigh, NC! 😁)

Thank's for your continual suggestions and prayers. I will follow up. Thank's again! Darryl

Hi, I having a rough time with my crps, this week. MY pain is like a roller coaster it has it ups and downs, it's the twist and turns that get me down. The twist and turns I am referring to is when I do things around the house it hurts more now than it did earlier in my journey. I am wondering if anyone feels or is going through the same difficulty with crps. Thank you for listening to me and I know I can get through this, but thank you.

I am so sorry this is happening, I know there are a few others on here with this. Not sure if this will help but I know that the we have an immunologist here in Naples that treats this with IVIG infusions…not sure the outcomes but it could possible be am option if you can find one in your area. I am suffering from small nerve fiber neuropathy which is incredibly painful and I am seeing an integrative pain management doctor and also having tons of tests to find out the cause, it too is extremely painful. I have an appointment with immunologist but not until October which is crazy. Hoping this might be help on those tread…

Take care…

Hi and to all my friends in pain…… I SAY PLEASE ADD A FEW WORDS thru out the day TO PRAYER.
Seek and you will should find. Oooh yeea.
Please excuse me if intruding here. Am only telling all of us pray to whom you like BUT do it ok.

BY prayers I know, I have come to know you all here at MAYO CLINIC.
How?
BY A FRIEND IN CONVERSATION AS I WAS IN MY OWN BUSS
PREOCCUPIED DID NOT BRING MY PAIN PILLS.

Well, here I am. Been 4 months y'all.
I have done more lately with everyone's comments than in my 14 yrs with this P. N ON THE FEET BOTH, NOW ON HANDS.
AND WORSENING.

J bisshop has provided a lot and thru his comments, have done a few other things not one of my NEOROS/ PAIN MNG/ And or PRIMARY DRs have even suggested I do even on my own personal “RISK” ...

THE IVS DID NOT DO A THING FOR ME. Nor the injections. Also very expensive. Make sure the INSURANCE IS COVERING. Mine did not $68K in question now.

Bye now

I come to you again for advice. First of all I'm glad to tell that I found a neurologist locally that is very familiar with CRPS and even though booked until December was alble to get me in 7/28 do to my condition. I have appointment with pain dr. this coming monday, He is not very good. Looking for new one but for now will have to do. I am currently on gabapentin 800mg 3 per day helps very little, and just started oxecodone 12.5 ER that is causes severe anxiety, have to get off. Upon reading others blogs many have had sucess with switching gabapitin to lyrica. My insurence will cover 82.5, 165 and 330 all ER. When others have made the switch to Lyrica what are overall comments, withdrall from gagapentin and do they need opiod with it? Thanks Darryl