This all started back at the end of October when G had surgery on her left foot. It was a complicated surgery to fix her tarsal coalition and flat foot. It was supposed to be the first of 2 surgeries as she was supposed to have her right foot done several months later. We traveled to southern Cal to a surgeon I believed was the best for the job. For the most part all seemed to go well with her recovery. She was non weight bearing for 8 weeks and then was finally cleared to get off her crutches and start physical therapy. The first time she tried to take a step she was in tremendous pain and quickly realized that it was going to be a process to begin walking without crutches. Days went by and she just couldn't put any weight on her foot. We finally got her into PT hopeful that she would start making some progress, but PT was excruciating for her. Week after week she continued to be in serious pain and her progress was so slow. After 4 weeks she wasn't even close to walking and I started to think that something was wrong. I made an appointment with a foot/ankle orthopedist at UCSF to get a second opinion on her surgery, and then I reached out to her original surgeon's office to get a copy of the operative report.
In the meantime Genevieve pointed out that her foot often got red, and kind of purplish and mottled looking when she stood up. When I touched her feet I noticed her left was substantially warmer than her right. When I told her this she said that when she was at PT her left foot would get really sweaty. As this information was coming to light I was getting frustrated that there was a delay in getting the operative report and I may have written a curt letter to her surgeon's office. He ended up calling us right away and we began describing what was going on with G's foot. We were on speakerphone and Genevieve told him even more things including her spasms and lack of range of motion. Her surgeon asked me to take him off speaker phone and this is when I heard the term CRPS for the first time. Actually that's not true. The night before I was googling her symptoms and came across it. I even sent a link to Genevieve with a question mark. But I hadn't really read much more than a blurb. Her surgeon was not alarmed sounding, but posed it as a possibility. He wanted Genevieve to see her PCP and get a referral to a pain specialist.
The next day we got G into her PCP who at first wasn't leaning toward CRPS, until he felt her feet and felt the temperature difference. He then saw her foot changing colors as well. Instead of referring her to a pain specialist he wanted to treat her himself with a "creative approach" as he called it. He wrote her a prescription for a couple different meds and wanted us to check back in with him in 5 days.
I went home and started googling, because thats what I do. I wanted to understand what we were dealing with and what the meds were. I was not coming up with any information on the first med so in addition to my googling I also joined a couple CRPS facebook groups. I figured that people dealing with this condition would be a great resource to tap into.
However nothing could have prepared me for the posts I would find in those facebook groups. This would be the beginning of some of my darkest days.
