Not too long ago a post popped up in my Facebook feed seeking volunteers for a clinical study at the University of Washington studying complex regional pain syndrome. This notice immediately caught my attention.
In 2014 I broke my left wrist and shared the story of how it happened in a column called “My first ice skating lesson will also be my last.” In a follow-up column called “Broken bone an eye opening, painful challenge,” I described a small portion of my recovery process.
But what I’ve never shared is that after my wrist fracture and surgery I was diagnosed with complex regional pain syndrome.
The first thing my occupational therapist told me after my diagnosis was “Don’t Google it.” So of course I went home and fired up the computer. An hour later, I was trying not to hyperventilate.
CRPS a chronic condition where the central nervous system gets so mixed up after a traumatic injury that the nerves go haywire. Symptoms include burning pain, sensitivity, swelling, decreased mobility and change of skin color. In many people, CRPS begins in the injured area and then spreads to other parts of the body. Sometimes the pain is so debilitating that people go on permanent disability.
Entertainer Paula Abdul has spoken openly about having CRPS. Many biographers think that the tycoon Howard Hughes also suffered from CRPS and that that is why in later years he couldn’t stand to wear clothes or have his hair and nails trimmed.
Sadly, there is no cure. Which is why the research happening at the University of Washington is so important.
In my case, CRPS made my left arm change colors and sizes, caused burning pain, aches and numbness, and made me fight for every centimeter of regained mobility.
Long sleeves were torture. I bought silk wristlets to protect myself from the cuff of my raincoat. I held my arm away from the water when I took a shower. I closed the left air-conditioning vent in my car because cool air hurt too much.
Living with chronic pain took a toll on me. It was like I was a chemistry beaker trying not to boil over. The chronic pain meant that my beaker was always partially full and adding a small amount of stress or discomfort made me erupt. It was hard to stay positive and not be grouchy all the time.
One of the scariest things about CRPS is that it can jump from the affected limb to the non-affected limb. Once I tried on a pearl bracelet thinking the smoothness of the pearls would be therapeutic, and it hurt so much that my “good” wrist burned, too. The condition caused my own brain to play tricks on me.
It was time to fight back by training my brain to heal, and this is where the University of Washington becomes part of my story.
My occupational therapist, Tony Dao of Edmonds Hand Therapy, had learned about graded motor imagery while studying at the UW. He had me do GMI exercises as soon as possible. The way it worked was that I put my damaged left arm in a black box with a mirror on it and my right arm next to it. Then I moved both arms at the same time.
When I looked at the mirror, I saw the reflection of my good arm, which hopefully rewired my brain into thinking that both arms were healthy. Graded motor imagery was a new enough treatment that my insurance wouldn’t cover the cost of the mirror box, but I was able to find one online for $50. Spending time with the mirror box became part of my daily routine.
When I was ready, I also got out my beginning Zumba videos. Zumba forced me to move both arms at the same time while focusing on the happy instructor on television — not my pain. Clapping was impossible, but my range of motion improved. Eventually, I added a pilates workout to my exercise routine that focused on wrist stretching and forearm strength.
Slowly, my sensory issues got better, too. Every day I had my kids “walk” their little fingertips over my wrist. It felt like fire ants but I built up my tolerance. After a year, I was able to wear sweaters again without being bothered, so long as they weren’t wool. It took two more years of recovery for me to be able to wear a watch.
Now, three years later, my wrist feels funny but doesn’t usually hurt. But if I stop taking vitamin C, the pain returns, my wrist changes colors and I’m back to wearing tank tops.
I’m better, but not cured, because there is no cure. Still, I consider myself to be a CRPS success story. I owe a huge debt of gratitude to my occupational therapist and what he learned at the UW.
I’m not a good candidate for the CRPS clinical study happening right now, called CREATE-1, but I’m excited to follow its progress. I emailed researcher Michelle Tiedeman about the study.
“CREATE-1 is a phase three clinical trial of an oral investigational medication for the treatment of pain associated with CRPS,” she wrote. “Eligible participants will be randomly assigned (by chance) to receive the investigational medication or placebo once weekly for six weeks.”
Researchers are seeking volunteers who have been diagnosed with CRPS or who have CRPS symptoms. You can find out more information on the website at www.CRPStrial.com or by calling 206-354-6857.
Being diagnosed with a chronic pain condition was terrifying, but my story at least has a happy ending.
I can clap my hands again, and it feels mighty good to offer up a round of applause to all the scientists, doctors and occupational therapists whose research contributed to my success.
Jennifer Bardsley is author of the books “Genesis Girl” and “Damaged Goods.” Find her online on Instagram @the_ya_gal, on Twitter @jennbardsley or on Facebook as The YA Gal.