16 Years With CRPS

3 more days before my flight, I hope for a new unit and the Doctors dont mess around.

I'm so sorry that you are suffering so much with this horrible condition, and for 16 years yet! I had a harsh body slam onto concrete floor in a warehouse store back in June of 2021. Had a ditsoid of a foot orthopedist affiliated within the medical group to which I belonged at that time. YES, I have ditched the group and belong to several excellent ones now, dependent on the specialty that I need.
So that incompetent doctor failed to diagnose what was going on within the ankle of left foot, kept telling it "it's soft tissue injury, and those types of injuries need TIME, can take a LONG time to heal..." Every appointment thereafter would not even examine the ankle, just glance at it and say "Give it another 6 weeks." The ankle and then the foot kept developing more and more difficult symptoms to deal, made my then 71 year old life MISERABLE, especially since the body slam (what I call it, was not "just a fall" it was a full body SLAM that reverberated throughout my entire body). That was in June, by the visit in November I was fed up with him since I had sent in letters detailing what was happening and that an MRI could reveal what the heck was going on in that painful ankle). AGAIN he said "Let's give it----"
and I cut him off sharply, firmly demanding and MRI. He again saiid it was not indicated in his opinion, but I interjected with "Then KINDLY write the script for a nerve and muscle conduction study." He was surprised by my firmness and tone, did not refute what I said, instead saying "it won't reveal much of anything." I repeated what I'd requested. He relented, saying "Very well, I'll put that in your record and you deal with finding a place to have it done."
Such a great guy....NOT! There was a qualified neurologist in the same group and I got the appointment within 4 weeks. Never got a message as is customary after procedures, letting me know what Dr. T had found. I made appointment with my husband's neurologist (in a different medical group), he saw me , examined the results of the conduction studies, looked at my ankle and said "That doctor was totally wrong. Your ankle is still swollen with skin discoloration. The nerve study supports why you are so miserable. I'm ordering the MRI that you SHOULD HAVE HAD MONGTS AGO." Bottom line: He diagnosed CRPS of that ankle, a whole year after that dang trauma to my body, and despite copious therapy, including an incredible therapist who had trained in Hungary and was excellent, I still have constant burning nerve pain but has now progressed up that leg, into the thigh, and affects the buttock as well. Yeah, all that inane verbiage of "give it another six weeks" did NOT help me at all, just delayed getting quality medical attention.
I've learned a great deal from research about the disorder, and joined a support group that meets online (based in Canada and I'm in the state of NY). Members have taught me so much about being grateful for the situations that I face because THEY indeed have heartbreaking problems, and yet each one has found ways to help themselves. One young guy (about 40) had both an arm and a leg amputated since his Canadian doctors had determined that was best for him. He actually is a speaker at a university not far from him, where he has been bringing awareness to the med students in a particular professor's class. Such resiliency, such courage, such spirit. Another is a vet who has been fighting his Canadian government's beauracracy to retain his benefits, totally unable to be gainfully employed. The support group moderator is excellent, and although I find it grueling, I also appreciate the sense of community within that support group. I strongly recommend you join a support group. Tell me which state you are in and I may be able to get info for you about Zoom groups that you may want to check out. You are NOT alone. There are so many people of ALL ages dealing with this insidious condition.
I wish you better days, and know that my prayers will include you. 💖

I am so sorry that you have and continue to suffer from CRPS for 16 years. Hoping they can get your SCS working again. What caused your CRPS?
I am newly diagnosed with CRPS December 2024. I have been to so many doctors for the last 4 years and no one could give me a diagnose. Finally, found a Dr that specialized in cancer pain. He diagnosed me within the first 3 minutes of my appt. It was such a relief to put a name to my pain. I am still trying different things but nothing has helped so far.
As you said there is not much that helps. Hoping you can get your SCS fixed soon for some relief.
Thank you for sharing all your treatments.

I'm so sorry that you are suffering so much with this horrible condition, and for 16 years yet! I had a harsh body slam onto concrete floor in a warehouse store back in June of 2021. Had a ditsoid of a foot orthopedist affiliated within the medical group to which I belonged at that time. YES, I have ditched the group and belong to several excellent ones now, dependent on the specialty that I need.
So that incompetent doctor failed to diagnose what was going on within the ankle of left foot, kept telling it "it's soft tissue injury, and those types of injuries need TIME, can take a LONG time to heal..." Every appointment thereafter would not even examine the ankle, just glance at it and say "Give it another 6 weeks." The ankle and then the foot kept developing more and more difficult symptoms to deal, made my then 71 year old life MISERABLE, especially since the body slam (what I call it, was not "just a fall" it was a full body SLAM that reverberated throughout my entire body). That was in June, by the visit in November I was fed up with him since I had sent in letters detailing what was happening and that an MRI could reveal what the heck was going on in that painful ankle). AGAIN he said "Let's give it----"
and I cut him off sharply, firmly demanding and MRI. He again saiid it was not indicated in his opinion, but I interjected with "Then KINDLY write the script for a nerve and muscle conduction study." He was surprised by my firmness and tone, did not refute what I said, instead saying "it won't reveal much of anything." I repeated what I'd requested. He relented, saying "Very well, I'll put that in your record and you deal with finding a place to have it done."
Such a great guy....NOT! There was a qualified neurologist in the same group and I got the appointment within 4 weeks. Never got a message as is customary after procedures, letting me know what Dr. T had found. I made appointment with my husband's neurologist (in a different medical group), he saw me , examined the results of the conduction studies, looked at my ankle and said "That doctor was totally wrong. Your ankle is still swollen with skin discoloration. The nerve study supports why you are so miserable. I'm ordering the MRI that you SHOULD HAVE HAD MONGTS AGO." Bottom line: He diagnosed CRPS of that ankle, a whole year after that dang trauma to my body, and despite copious therapy, including an incredible therapist who had trained in Hungary and was excellent, I still have constant burning nerve pain but has now progressed up that leg, into the thigh, and affects the buttock as well. Yeah, all that inane verbiage of "give it another six weeks" did NOT help me at all, just delayed getting quality medical attention.
I've learned a great deal from research about the disorder, and joined a support group that meets online (based in Canada and I'm in the state of NY). Members have taught me so much about being grateful for the situations that I face because THEY indeed have heartbreaking problems, and yet each one has found ways to help themselves. One young guy (about 40) had both an arm and a leg amputated since his Canadian doctors had determined that was best for him. He actually is a speaker at a university not far from him, where he has been bringing awareness to the med students in a particular professor's class. Such resiliency, such courage, such spirit. Another is a vet who has been fighting his Canadian government's beauracracy to retain his benefits, totally unable to be gainfully employed. The support group moderator is excellent, and although I find it grueling, I also appreciate the sense of community within that support group. I strongly recommend you join a support group. Tell me which state you are in and I may be able to get info for you about Zoom groups that you may want to check out. You are NOT alone. There are so many people of ALL ages dealing with this insidious condition.
I wish you better days, and know that my prayers will include you. 💖

Hi im new to the group . Wanted to share my story of Complex Regional Pain Syndrome .
2021 - I had a 1m fall at work from elevated walkway onboard a fuel cargo ship. Landing knee 1st onto a gridmesh step. I tried to catch my fall extending my left arm to a stair railing . Next day my knee was sore but my left shoulder a severe dull inner pain. Docs sent me for a scan , revealing a torn Labrum . (Shoulder tear) I was tbooked to have private surgery within 2 weeks . With this surgery they add a 12hr nerve block . Post opp when the nerve block wore off i knew i was in trouble . I shaking uncontrolably in pain like i have never encountered before . The opp was a overnight stay . I sayed for 2 more nights . Sent home 6 weeks 24/7 arm in a sling . Other than for pendular movement and showering . Week 7 start physio. I cant move my arm and physio says i need to get pain levels under control before they can do anything . Sent to a pain management specialist . My arms all blotchy , my elbows blown out to tennis ball size , and im getting bolts of lightning traveling through my arm . Im told i fit the criteria of CRPS . Physio . Ive done mirror therapy . Moving good arm in front the mirror caused bad arm to flare up. Droped back to picture therapy . Pictures of people using theur arm and i cant for the life of me identify the difference between left or right hands in a picture . Im told ive lost the pathway to an extent and cognitive function . Its 4 years now post opp and i have failed return to work medicals twice . Ive been poked and prodded and jumped through every hoop like a circus pony . Im over it . I rarely leave the house for the fear of someone bumping my arm . I havnt had the lightning bolts for a while but know all to well they are only 1 sudden movement away . I still have a limited range of movement in my left arm , 18% permanent impairment . Im now having back and opposite shoulder issues as i only lift items with my good arm . I didnt believe in CRPS at the start and i was so convinced that i had a botched surgery . The turning point was when my physio said to read forums likes of peoples accounts of CRPS . SO many cases near identical to mine . All this from a 1m fall

What is the name of the support group in Canada? Can anyone with CRPS join?

Thank You for this, its appreciated very much. I was stationed in TN at FT Campbell but I moved to the Philippines for stable weather patterns. The good thing about the internet is we can still participate in things like this. Im 51 now, is there a way I can get more information about the one that did the amputation? Doctors are really hard headed when it comes to things like that.