Written by Mia Lane for the RSDSA blog.
My daughter was just 13 years old when she developed Complex Regional Pain Syndrome.
It began in late February 2014 with what seemed like a simple accident. She slipped on a puddle of water on the kitchen floor and injured her right foot. At the time, we had no idea that this minor incident would mark the beginning of one of the most challenging journeys of our lives.
What made her case truly extraordinary, however, was the speed of her diagnosis. Our general practitioner recognized CRPS almost immediately, diagnosing her within five minutes. In hindsight, and after everything I have since learned about CRPS, I realize how rare this is. Many patients around the world go undiagnosed for months, even years, enduring unimaginable pain without answers.
The suffering caused by CRPS extends far beyond the patient. Watching a loved one endure such intense, relentless pain is deeply distressing. Traumatizing, even. As a caregiver, the helplessness you feel, knowing there is little you can do to ease their suffering, is something that cannot truly be put into words.
We live in a coastal city in South Africa, and I can say with complete gratitude that my daughter received exceptional medical care. Our doctor worked alongside a physiotherapist within the same practice, and treatment began within 24 hours of her diagnosis.
Her medical team consisted of just two individuals: a general practitioner and a physiotherapist. They were not specialists in CRPS, but they were dedicated, compassionate, and willing to go the extra mile. Researching, adapting, and committing themselves fully to her recovery.
From the outset, we made a conscious decision regarding her treatment approach. While medication was prescribed, my daughter, remarkably at just 13 years old, was determined not to rely on it entirely. Together, we chose a balanced approach: using medication in moderation, while focusing primarily on holistic and rehabilitative therapies.
Because of her age, she was able to actively participate in her own care, communicating her pain and progress clearly – something that proved invaluable throughout her recovery.
When treatment began, her pain levels were at a 10 out of 10. Her recovery plan included a combination of therapies, such as (but not limited to):
– Graded Motor Imagery (GMI) (Later during treatment, when pain levels dropped below 10/10)
– Mirror therapy
– The use of a TENS machine (also introduced later, once pain levels had decreased)
– A balanced, nutrient-rich diet – an essential component of healing
As expected, our daily lives were significantly impacted. She relied on crutches and was initially unable to bear any weight on her foot. Even the sensation of a sock touching her skin was unbearable, let alone wearing a shoe.
Explaining her condition to others (especially friends at school) was incredibly difficult. How do you describe something as complex (pun intended!) as CRPS to someone who has never heard of it?
The nights were the hardest. I would hear her quietly crying, knowing she was in excruciating pain. I often couldn’t even sit beside her on the bed, as the slightest movement of the mattress would intensify her discomfort. The sense of helplessness in those moments is something I will never forget.
And yet, despite it all, she recovered.
After approximately five months, my daughter reached remission. I firmly believe this was due to the combination of early diagnosis, a dedicated medical team, and most importantly, her own unwavering determination. She was resolute in her goal to reclaim her life.
Then, in August 2018, almost exactly four years after reaching remission the first time, CRPS returned. She was 17 at the time. But this time, we were prepared.
We understood the condition, recognized the symptoms, and immediately implemented the same treatment approach. By the end of September, going into October 2018, she reached remission once again.
Today, my daughter is a thriving young adult, living a full and pain-free life. She is a qualified personal trainer, holds a certification in nutrition, and has recently completed her studies in sport psychology. Her journey is one of resilience, courage, and hope. And that is the message I want to leave you with:
There is hope. Remission is possible. With the right medical support, early intervention, and determination, recovery can happen.
I share our full story in my e-book, Five Minutes, published under the pen name Mia Lane. It is currently available on Amazon. The cost is under $6 or free to read in Kindle Unlimited. A paperback version is also coming soon. The book also includes resources for those seeking reliable CRPS support, particularly in the United States.
If you would like to follow my journey, you can find me on Instagram or by reaching out via email at [email protected].