Managing complex pain thanks to a new “superpower”: Jacqueline’s story of hope
Hi! I am Jacqueline and I am 17-years-old. I want to tell you about my new superpower. I know this sounds strange, but let me explain. After living in pain for three long years, the Montreal Children’s Hospital’s Dr. Pablo Ingelmo, Director of the Edwards Family Interdisciplinary Centre for Pediatric Complex Pain, and his team helped me overcome amplified musculoskeletal pain syndrome (AMPS), a condition that caused excruciating and persistent pain throughout my body.
The pain started in July 2016. While helping my grandpa build a deck, my ankle suddenly started throbbing. My mom took me to the Children’s Emergency Department. X-rays showed no injury but soon my knees and hips also began hurting. Within weeks, I morphed from an athletic teenager to an invalid who needed assistance walking to the bathroom.
Dr. Ingelmo was so compassionate and encouraging as I started physiotherapy and learning psychological distraction techniques. However, I was caught in a vicious cycle of pain that no medications or sleep aids could relieve. I cried when I was alone and even thought of killing myself. Anything to stop the pain. My life was a nightmare, and I was only 13.
Slowly, with much encouragement from my family, the suggested exercises began to work. I started walking again, albeit stiffly, like a robot. In September 2017, a year after the horror began, I was finally pain-free and once again able to attend school regularly.
However, the pain returned. Now, more mature at 15, I persevered, even on horribly painful days. It was not easy! Dr. Ingelmo said that, in order to recover, I had to fight my pain and keep on moving in spite of it. Eventually, I even ranked first in my grade in long-distance running. Yet, at the end of the race, my gym teacher asked if I was really in pain. Because my condition is "invisible" some doubted my claims, which was so frustrating.
It has been a long journey. Now I know that I have to maintain an active lifestyle, and incorporate stress reduction techniques into my daily routine. I appreciate having a toolbox filled with ways to maintain my psychological wellbeing (such as distraction, deep breathing), and a variety of compression wear (thanks to my aunts) that I can pull out instinctively whenever the pain begins. I have a new-found confidence in my ability to manage my pain. It feels, well, quite frankly, like I now have a superpower!
Today, I have regained my life and am in the second year of my CEGEP nursing program, determined to pursue my dream of helping children living with complex pain. And because of my valuable first-hand experience as a patient, Dr. Ingelmo has recently asked me to help him digitize bilingual versions of both doctor and patient questionnaires.
I am grateful and humbled to share my story, and hope it will inspire others with complex pain. I did it! So can you!