CRPS anniversary

Tomorrow it will be a year since I was diagnosed with CRPS (Complex Regional Pain Syndrome). I had been living with increasingly bad foot pain for almost a year before that, and had become housebound. I was afraid of my shoes.

A podiatrist and a physical therapist had told me that I should consider surgery. It wasn’t an entirely unreasonable recommendation: that foot has an obvious deformity (a bunion). Another podiatrist, who I chose because he preferred to avoid surgery, was clearly stymied.

So I started looking for surgeons, even though I was terrified that surgery would somehow make things worse (not an unfounded fear, as it turns out). The physical therapist I was seeing recommended a practice that was outside my usual search area but within my insurance network. “They have terrible bedside manner,” she said, “but they’re all very good surgeons. It’s who I would go to if it were my foot.”

I’d had to wait six weeks to see the first podiatrist, but I didn’t have to wait long to see the foot surgeon. As promised, the whole practice was terribly cold and efficient. It was horrible.

“I’ve never seen anyone in this much pain from a bunion,” said the surgeon. He pointed out that my left foot was a different color and temperature than my right foot. It was, he said, a neurological problem. He diagnosed me with Complex Regional Pain Syndrome and referred me to a pain clinic.

As horrible as the appointment was, I remember thinking as I hobbled out of the office: “I’m going to get my life back.”

Within 24 hours of the diagnosis, the pain had spread to my other foot. Within 48 hours, it was in my hands as well. This, I quickly learned, was completely normal and nothing to panic about. In fact, it was a good sign: clear evidence that the pain had nothing to do with the minor injury I’d sustained in May of 2022.

There was a bit of a wait for the pain clinic. While I was waiting, I discovered the Curable app. I discovered Journalspeak. I discovered a book by someone who said she had fully recovered from CRPS. I started to feel better. Not great, but better. It was enough to give me hope. By the time the pain clinic got around to calling me, I had no interest in going there.

Eventually I discovered Dan Buglio’s YouTube channel, Pain Free You. Those free daily videos were the thing that made the biggest difference for me. By mid-June, when we had a flash flood that washed out our road, I was able to put on my shoes and walk down to photograph the damage myself. It wasn’t easy, but it was doable.

A year later, I am no longer afraid of my shoes. I can drive and garden and go for walks and work on sculptures. I still have symptoms sometimes, but they are mostly mild and I don’t let them stop me.

In the process of recovering, I have come to understand that I’ve been living with chronic pain for most of my life. My relationship with pain and fear continues to unfold like a magnolia blossom after a long winter. If there is nothing wrong with my foot, then there is also nothing wrong with my knees. Or my back. Or my shoulders. Or my belly. Or my heart of hearts.

Thank you, Dr. R. Thank you, Dan. Thank you, Tamara. Thank you Dave, who took care of me when I was housebound and stands as a witness to my recovery.

Thank you, lucky stars.

Larissa King @larissaking