KM: Hi Ross! Tell us a bit about yourself!
Tell us more about your experience with osteoarthritis… When were you diagnosed, how long had you had symptoms, and what did that experience look like?I was diagnosed with CRPS (Complex Regional Pain Syndrome) back in 2006. It all started as a result of a simple surgery in my left wrist to remove a cysts. Immediately I began to swell from fingertips to my shoulder and the skin became very modeled looking in colour and waxy. Worse than that however is the intense burning chronic pain that I have to live with. There are a host of other symptoms that go along with like hair loss, disfigurement, and sensitivity to touch to name just a few. I ended up losing function of my hand as a result. About two years later the disease spread down to my left ankle after tearing the tendons in that ankle. As a result of it spreading I was only able to walk with the use of a cane. In 2011 I was diagnosed with Osteoarthritis in my neck, back and hands while I was undergoing treatment and testing for my CRPS. This makes the pain worse and I deal with more flare ups with my CRPS because of the osteoarthritis. As the symptoms of the osteoarthritis, such as bone loss and joint stiffness, progress it makes my CRPS symptoms worse.
CRPS and Osteoarthritis have flipped my life upside down. I now live my life in constant pain with little relief of the pain. I have been forced to go off on permanent disability, and my wife and kids now have to watch their father living a life of pain with there being little they can do to help. Life has been radically changed for them as well. My wife has to care for me when I’m not doing well and my kids can’t grow up living a regular childhood. It impacts the entire family! Every day has now become managing my quality of life.
What I really wish people knew more about with arthritis and my CRPS is the hidden things that people don’t often understand or see. People sometimes only see the one side of things and so they might see me one day and say things look perfectly normal. What they don’t see is that evening or the next day when I’m curled up in the fetal position in such intense pain that I end up in bed all day. Or the mental side of things in trying to deal with this every day! They call them a invisible illness for a reason.
Connecting online has been a huge part of my journey so far. Not only have they provided the much needed support that I don’t have here in my city but have provided me opportunities to advocate for my illnesses. I initially got involved online because I was trying to find a support group for my CRPS. I started getting involved with various patient/advocate groups such as Creaky Joints, Breakthrough Crew, Patient Chat, Arthritis NatlResFnd, WEGO Health, and a few others to help advocate for my illnesses.
My final thoughts are these! This has been an epic journey that has yet to find its conclusion. I’ve had periods of time in this journey where I’ve had to go through things most people don’t have to go through! However I remain optimistic that someday I will come out the other side of this battle able to defeat both of these illnesses. Until that time I will continue to advocate and help others afflicted with CRPS and Osteoarthritis.
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