by Jenny Picciotto
Editor’s Note: Jenny Picciotto is a writer who has CRPS and facilitates a CRPS support group. She is currently working on a larger project that will include this article, but has given us permission to publish this article in the meantime. She is also a massage therapist and yoga instructor, and enjoys thinking deeply about simple things.
I’m approaching my fifth anniversary of being diagnosed with Complex Regional Pain Syndrome (CRPS), a disorder of the nervous system that affects nerve signaling, the immune system, and blood vessel function. People with CRPS experience intense pain, swelling, sensitivity to touch, alterations in limb temperature, changes in bone metabolism, and muscular problems. Some people have mild symptoms and recover, while others suffer ongoing severe pain and disability. Experts don’t understand the cause of CRPS, or what treatments are effective to manage it.
I am adjusting. I am still adjusting. I think I will always be adjusting.
It began with sensitivity in the ball of my foot while playing tennis that felt as if a bone was grinding into the court. It progressed until I couldn’t bear weight and was walking on the edge of my foot. After a year and a half of conservative treatment with four different doctors, I landed in a podiatric surgeon’s office. He was sure he could help me with the tools in his tool box – surgery. Four weeks post surgery, my foot was still swollen, severely bruised, and I was making weekly visits to his office to have it unwrapped and washed. One night I woke up in pain like I had never experienced before; searing, burning, unbearable pain. The next time I saw my surgeon, he diagnosed CRPS.
Since then, everything has been adjustment.
I had no idea how much my life would change. It’s been like living on a roller coaster. The first six months brought corticosteroids, pain medications, seizure medications, topical anesthetics, and sympathetic nerve blocks. Every new treatment sent me soaring with optimism; every failure plummeting into hopelessness and disbelief. Meanwhile, the symptoms progressed.
Within the year it spread to all four limbs. No longer able to work, I spent most of my time in bed and needed a cane to stabilize while walking. The only time I was pain free was while sleeping. As my physical abilities declined, it felt like pieces of my self were slipping away, as if I was in free fall into endless darkness. I was in disaster management mode.
Adjusting meant working through grief, depression, hopelessness, fear, and loss of control. With the help of a psychologist who specialized in pain management, I learned to face my feelings, my emotions, and my pain.
With ketamine infusion therapy, the full body burning, icy deep bone pain, and numbness gradually resolved. After a year of this therapy, the symptoms were limited to my foot and lower leg, my pain levels were lower, and it started to feel safe to inhabit my body again.
With my symptoms reduced, I worked on acknowledging and accepting my physical and emotional pain, turning them from detriments that froze me into assets that move me ~ compassion, empathy, appreciation, self determination. I gradually reclaimed activities, confidence, and hope. Today I am rarely pain free, but by restricting activities, I can manage.
I’m still coming to terms with the idea that this is as good as it’s going to get. But there are no guarantees; an injury might lead to a spread, ketamine infusion therapy might not always be available, symptoms might get worse. Accepting uncertainty has freed me to turn toward life, valuing what I can do, despite limitations.
Recently, I tripped over a fan left on the kitchen floor. I was turning around to put a cat food lid in the trash, and the next moment was flat on the floor. I hit the hard tiles with my full weight, falling on my hip, knee and elbow. Stunned, I picked myself up and moved the fan. Thankful that my hip wasn’t broken, I watched anxiously for bruising and swelling. Falling down was a wakeup call.
It was a reminder to take good care of myself, to take reasonable precautions. Not to be overconfident or push myself too hard. As much as I’m thankful for what I can do and try not to dwell on what I can’t, I can’t afford to overlook danger.
I’m grateful for being able to take the dog on a walk, do laundry, and cook dinner. I hope I’ll be able to enjoy these activities for a long time. Adapting to living with CRPS has meant modifying my hopes for the long term and goals in the short term. Living a simpler life, I’m satisfied with less and cherish everything more.
I don’t believe the adage that every cloud has a silver lining, that every hardship contains a hidden gift. But I do believe that with hard work, acceptance and fortitude, one can make the best of a difficult situation. It is an exercise in endless adjustments.