The Life Long Condition

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I truly believe that if you have CRPS, you've probably always had it in one form or another. Knowing what I know now, I can trace symptoms all the way back to when I was a baby. My symptoms truly ramped up when I was just turning 18 though. I was in a car accident, and although I sustained no major injuries, the pain from the crash never truly went away. It hurt, but it was like being a bit sore each day and not too bad. Then I had three infections all at once, and everything quickly spiraled out of control. Every day I was in massive amounts of pain, and no one knew what was wrong with me. I couldn't work, I couldn't drive, and could barely even take care of myself. After multiple doctors I was eventually diagnosed with Fibromyalgia.

I now understand that it was never truly Fibromyalgia, although the symptoms are quite similar. Rather I was experiencing a full body CRPS flare-up. It took five years from its initial onset for me to fight my way back up through the depression and the condition and return to driving and the workforce. During that time I saw my hopes and dreams dashed, as I was never able to attend college or do all the things I wanted to do. It was a hard fight, but eventually it seemed the Fibromyalgia had went into remission.

For the next eight years I went mostly symptom free. I was never “normal”, but everything was manageable and didn’t impact my ability to work or drive or anything. That is, until I broke my foot. I didn’t even break it in a spectacular fashion. I simply tripped. I did the whole no weight bearing thing for the time I was told, but the pain never seemed to ebb. I had a terrible doctor, so I didn’t start physiotherapy until I’d already finished the no weight bearing period and been told the bone was healed.

The physiotherapist identified that my foot was in fact still broken, but, with the help of a specialist doctor at the clinic, I was cleared for partial weight bearing. They worked on me as a team… and worked on me, and worked on me. My foot was not healing. I was just as swollen and painful as when the break happened. Things came to a head four months after the break when my physiotherapist told me to start trying to flex my right foot with the partial weight bearing. Like actually roll it when I stepped, like a normal gait. I left and tried it and I couldn’t do it. My foot immediately swelled hard and was in so much pain as soon as I’d try.

The next visit I saw him I told him everything and he was very frustrated because at four months in I should have been much further along. He was thinking it through and ordered up what we were going to do for the day to his assistant, and then he went to leave. But he stopped. He stopped in the door and it was like he’d had a light bulb moment. He came back and he started asking me a series of questions. Have you noticed your right foot sweating more than the left? Changes in hair and nail growth? What does the pain feel like? Etc etc. Then he went and consulted with the specialist doctor at the clinic and they both came back to the room. They told me that I had Sudek’s Atrophy, also called CRPS and RSD.

My biggest shock didn’t come then, but after I went home. I researched the condition and realized that I needed to rethink my entire past. Everything I had went through, all the weird illnesses and other diagnoses were all one condition. The entire time it was CRPS affecting me.

That day they modified my therapy and I started to improve. It was very hard going. The doctor would numb my foot and then I would be given really intense therapy and workouts way beyond what I would have been able to do normally. With the intense therapy I started to improve. Of course, it never fully went away, but I am one of the lucky few that was able to turn back the tide at the start. I know just how much worse off I could be if my physiotherapist wasn’t aware of CRPS.

Since that day I’ve been fighting. Some days are worse than others. The pain has spread up my leg and now goes as high as my hip. I’ve been experiencing some spread to other areas. Every day is a hidden fight with myself, but every day I learn new techniques to cope and manage. Every day I hold out hope that someday, just maybe someday, we can all beat this for good.