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From marathon runner to mobility aids in 2 years — my CRPS story

greg_c
Two years ago I was training for my third marathon. I had a minor ankle injury — twisted it stepping off a curb. Nothing dramatic. Should have healed in a few weeks. It didn't heal. The pain got worse instead of better. Then it spread. Then my foot turned colors. Then the burning started. By the time I finally got a CRPS diagnosis (8 months and 4 doctors later) the pain had spread to my entire right leg. Now I use a cane on bad days and a wheelchair on the worst days. I'm 41. I have a closet full of running shoes I can't wear. I'm not posting this for sympathy — I'm posting it because when I was first diagnosed I could not find anyone who understood what I was going through. CRPS is so rare that most people have never even heard of it, including some of the doctors I saw. If you're reading this and you have CRPS or suspect you do, you're not crazy. This pain is real. And you're not alone even though it feels like it. Also: if you have a "minor" injury that won't heal and the pain seems out of proportion to the injury, PLEASE push for a CRPS evaluation. Early treatment matters.

3 Replies

amberRN

I'm a nurse and even I had barely heard of CRPS before my diagnosis. The lack of awareness is staggering. I went to 3 different doctors who told me I was "healing normally" while my foot was literally changing colors and the pain was spreading. Your point about early treatment is SO important. The earlier you intervene, the better the outcomes. If I'd been diagnosed in month 1 instead of month 8... I try not to think about that too much. Thank you for sharing your story. Visibility matters.

newtocrps

i was just diagnosed 2 months ago and reading your story is... hard but also comforting? knowing someone else went through the confusion and the doctors not knowing and the pain spreading. i dont want to end up needing mobility aids but i appreciate you being honest about your experience instead of pretending everything is fine. how did you handle the mental side of it? going from running marathons to a cane? i was really active before this too and im struggling

dan_cg

Not CRPS specifically but my wife went through a similar identity shift with lupus — from very active to very limited. The grief of that transition is real and enormous. Your story resonated with both of us. The closet full of running shoes... my wife has a closet full of hiking boots. Neither of us can bring ourselves to get rid of them.

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