Finding hope through community – Stacie’s story

Now Stacie spends most of her time in isolation. She has lost most of her friends, only a devoted few still stay in touch, and even something as simple as cooking dinner feels like a mountain far steeper than any run she once conquered.

Thirty-five years ago, Stacie was involved in a car accident that left her with a broken femur and a reconstructed ankle ligament in her left leg. She expected to be up and reengaging with her beloved communities after the normal healing period was over. However, that period never seemed to end. “I was still having pain. Every time I told the doctor, he just said everything looked fine,” she said. Two decades and a lot of pain later, Stacie was diagnosed with Complex Regional Pain Syndrome (CRPS).

The road to diagnosis 

Returning to her doctor, Stacie continued with her life as normally as possible despite the pain.  A year later, Stacie was snowboarding with a friend who worked in the medical field. “After every run down the slope, I had to take off my boot and rest my ankle,” she said. “That was when she told me that something was really wrong. I should not be feeling like this.”

When she returned to her doctor, she was told once again that everything looked normal. “Since I was still in pain, he prescribed a cortisone injection in the affected area. That injection destroyed the soft tissue in the surgical location. All I had left was bone and tendon,” she said, adding that she never received an explanation for the damage.

Stacie then went through a series of physical therapies. “Since my doctors kept telling me I was fine, I lived with this pain for another 20 Years,” she said.

Eventually, the pain in her foot became so overwhelming that she underwent a second ankle surgery, hoping for relief. Fortunately, Stacie had enough sick leave from her job with the California Department of Food and Agriculture to begin rehabilitation and physical therapy. But instead of improving, her symptoms intensified. “My CRPS symptoms were flaring up,” she explained. “My leg and ankle felt like they were on fire, being frozen, being stabbed, and screaming for me to help.” Soon after this, a different orthopaedic doctor ran further tests and diagnosed her with CRPS.

On receiving her diagnosis, Stacie felt nothing. She said, “I had no idea what CRPS was. My doctors didn’t have any real information for me. But once she began learning more, the weight of the condition sank in. Her diagnosis, Stacie said, “was crushing… and a relief.”

Immediately after getting diagnosed with CRPS 

Keen to get back to work, Stacie tried spinal blocks, but they only offered relief for 24 hours. “I had to resign my position,” she said. “It was a crushing blow. I love to work. Working brings me a sense of camaraderie and purpose. I loved having a crew and supervising people.”

Being unable to keep up with the things she loves was also devastating. Stacie said: “I can no longer paint and I had to leave my chorus. I had to leave my chorus the day before my last performance – the feeling of letting down my teams was terrible.”

Committing to community events became impossible, as CRPS symptoms vary day to day. This meant Stacie’s social circle shrank to a fraction of what it once was. The chronic pain made it difficult to be reliable, and only a few friends continued to keep in contact.

The impact of CRPS left Stacie grieving the life she could no longer live. “I was adrift,” she said. No longer able to express herself through her art, engage in sports, tend her garden, or help her loved ones, Stacie was in one of the darkest periods of her life.

“The limitations on CRPS patients are unpredictable and extreme. I wish people could understand that it’s not that we ‘don’t want to do it’, we can’t do it,” she said.

Seeing a mental health therapist and being introduced to someone living with CRPS provided some comfort, but the reduced mobility and relentless pain still felt unbearable. Stacie felt cut off from people and purpose.

Effective CRPS treatments and finding community 

Stacie’s parents, brother and husband do what they can to support her with her CRPS. A friend and a neighbour raised money for IV ketamine treatment, which brought her some relief. Stacie said, “They take the pain down about 30% for about three days. This gives me time without the extreme discomfort to relax a little bit.”

Alongside her IV ketamine treatment, grounding therapy has been a big help for Stacie. She shared that mental health support, being kinder to herself, and remembering to manage her expectations to match her health have helped her to live with chronic pain. Learning to crochet has also helped Stacie express her creativity, which she found manageable with her CRPS because it doesn't require many tools or much cleanup.

Stacie has found strength and a sense of belonging with Burning Nights CRPS Support. “The Burning Nights Zoom meets help me,” she said. “This organisation has provided me with a much-needed community.”

Stacie discovered Burning Nights CRPS while researching alternate CRPS treatments online. Without having the charity’s community to connect with, Stacie shared that she would feel far more alone and misunderstood. “It’s so great for me to be able to listen to and share with other people living with CRPS,” she said. “This organisation has filled a gap for me. I can’t thank Burning Nights CRPS enough.”

Become a member

To join as a member of Burning Nights CRPS Support, you’ll be helping to raise much-needed awareness for CRPS. Your support plays a vital role in ensuring that everyone affected by CRPS, like Stacie, can access the information, guidance and community they need.

As a member, you’ll benefit from CRPS information materials, regular membership updates, and access to our bi-annual magazine, The Warrior’s Lifeline,  plus more.

Sign up today