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. 💖