*Maybe trigger warning? I talk about being afraid and my symptoms/flares.
Hi everyone. I’m new to this subreddit and I want to rant/ask some advice.
I was formally diagnosed with CRPS in 2022, months after a second surgery on the top of my foot. The area that was affected at the time of diagnosis did not seem big (about the size of the top of my fist). They thought I had maybe fractured my foot, so I wore a walking boot for two months before my next xray came back with nothing unusual. They have me steroid shots in that part of my foot, numerous cream and ointment medications, arthritis medication… The pain persisted and I was sent to get a three-phase bone scan and was confirmed to have CRPS as a result, along with my other symptoms IN BOTH FEET. The left was very impacted and the right was impacted less intensely upon first diagnosis.
From there, I was referred to a pain management specialist who never explained what CRPS was or that it could spread to a larger area. The first treatment that was recommended was a spinal block. Then a second. Then a third. All that happened was my leg turned red and was warm for a few hours. Back to normal the next day after all three blocks. After this failed, he said that the next step would to be a device in my spine to shock my spinal cord and interrupt the pain signals sent by the nerves my feet. I was 21 years old at the time and did not like the option of having a device implanted into my back at such a young age, so I declined and was never given any other options or treatment so I did not return.
Fast forward… My flare ups and discoloration now encompass my entire foot and reach above my ankles IN BOTH FEET and I really hadn’t thought about the affected area being so much larger until I decided to go and look at photos around the time of my diagnosis. When I compared the two… wow. I was so shocked and afraid because as I’ve mentioned, I had no idea it could spread like this.
From there, I started doing my own research. Nobody, at any point during diagnosis or treatment, told me anything that maybe could’ve helped me or at least made me aware. No nerve medications were given, no physical therapy or cold therapy, nothing. I don’t even know if the right foot ever had damaged nerves in the first place or if it just mirror spread.
So… Is there anything I can do to slow the spread? I’m terrified because I’m now 25 years old and don’t want it to keep spreading the rest of my life. I’m looking into different pain management doctors that specialize in CRPS in my area — but should I also see any other specialists?
TLDR: I was diagnosed with CRPS in 2022 and was never told it could spread. Realized this year that it has spread to encompass a much, much larger area and didn’t realize until I compared photos. What kind of doctor should I see besides a pain specialist?