CRPS Awareness Month 2018 – My Story

IMG_0860.JPGI’m not usually keen on writing a ton about the chronic illness part of my life as I don’t feel that it should define me or take up more space than it already does. That being said CRPS, or Complex Regional Pain Syndrome, has a particularly important spot in my world.

Having been an athlete in some capacity for the majority of my life, I have had my fair share of injuries and physiotherapy. At fourteen, pain was not foreign to me. What was foreign to me was the world of chronic, intense pain that awaited me in the years ahead. What I did not know was that pain, given a perfect storm of conditions,  could take on a life of it’s own. I did not know that pain could become a constant unseen assailant; a disease unto itself.

For my fourteenth birthday I received a pair of roller skis, pieces of equipment similar to roller blades designed to simulate the act of cross country skiing. I had used this equipment plenty of times before, and never been injured. About a week afterwards, while out training on my own, I fell. My knee twisted at an awkward angle, and I felt a small pop and some fairly intense discomfort. After shaking off the surprise of the fall I managed to ski home, knee already swelling and bruising. The pain of that fall has never gone away. In fact, over the course of the next two years, the pain got worse. Way worse.

I spent nearly a year with several physiotherapists, trying every exercise in the book to strengthen and heal my aching knee. I began to see a few sports medicine physicians during that time, one of whom eventually ordered an MRI scan (the first of many). When the sports medicine physician felt unsure as to whether my MRI results showed an injury or not, I was referred to an orthopaedic surgeon. That surgeon immediately identified a torn meniscus (cartilage within the joint, effectively cushioning) in my left knee, and suggested surgery as, nearly a year after my injury, physiotherapy had clearly failed. That first surgery was intended to simply stitch my torn meniscus back together, yet the stitches never worked; instead I ended up with painful internal scar tissue. A year later, enter surgery number two: this time to remove the scar tissue and torn meniscus. Ideally, this would have been my final knee surgery, and I could have moved on with my life. However, as it usually does, the universe had other plans for my life.

The pain continued after my second surgery, much to everyone’s confusion. We gave my knee time and physiotherapy to heal, but received very little benefit. Another MRI was needed, and another surgery decided upon. At this point, in an effort to alleviate strain on my legs, I had quit cross country skiing and biathlon for flat water kayak racing.

Throughout much of high school I put up with the push and pull between my desired life and my reality; of training hard only to need another knee surgery and to then suffer a major setback. I’m pretty sure that I spent more time on crutches during my teens than I did actually walking.

After my third surgery, the pain briefly seemed to improve and then intensified tenfold, becoming a new burning yet deeply aching sensation akin to frostbite. I tried medications upon medications intended to treat this, to very little effect.  At this point my MRI scans appeared normal, so nobody really was able to tell me why this had occurred. Around this time other symptoms of CRPS also began to appear such as blue, mottled skin, chronic swelling, temperature changes (my leg was very cold or very warm to touch), and changes to my bones around the injury site visible on a bone scan. No doctor that I saw had an answer to my symptoms for nearly a year, until I finally got an appointment at my local rehabilitation hospital. A physician there took one look at a photo I had taken of my swollen and discoloured leg, and dashed out of the room. I would later learn that he took that moment to speak with a woman who would become my physiotherapist and one of my biggest advocates medically, not to mention the reason that I can walk at all today. Through all of the medical challenges that I would later suffer, this woman went above and beyond to help me in any way that she could.

I spent three years in multiple hours of physiotherapy every week. I have fought for very little in the way that I fought to walk again and push down the pain that is considered, on the McGill pain scale, to be worse than childbirth. I was incredibly lucky to ultimately receive the care that I did, when I did. I should not be able to walk at all. CRPS is colloquially known to some as the Suicide Disease, as the unrelenting pain is often more intense than it’s sufferers can bear. I still deal with pain and symptoms, but these days I can cope. Not everyone is so fortunate. People who have CRPS need awareness. We need better treatments. We need funding for research. We need a cure.

Resources:

https://www.canadianpainsociety.ca/

http://www.rsdcanada.org/parc/english/resources/coalition.htm

https://rsds.org/

https://rarediseases.org/organizations/reflex-sympathetic-dystrophy-syndrome-association-rsdsa/

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