How it all started...
CRPS is an odd one. Nobody really knows much about it. About what triggers it, about what the underlying pathological processes are, about how to treat it. The theory at its most simple is that there are changes in central nervous system, and that the brain becomes ‘confused’ in how it recognises pain. That as well as recognising something that should be painful as such – I don’t know, stubbing your toe or burning your finger, it decides that every contact is painful. Things that you’ve always taken for granted: putting on a pair of trousers or wearing shoes, hugging a loved one, patting your dog, hurts. Even something as insignificant as a light, gentle breeze can cause excruciating pain for some. There is no cure, and pain management is not always effective. I have been fighting this beast since I was 14 years old.
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The story begins on a rainy June in 1999. It was the Queen’s Birthday long weekend, and a small group of us from the local Scout troop had set out on our Adventurer hike weekend – a three day bushwalk through the beautiful wilderness of Wilson’s Promontory, of the coast of south eastern Victoria. The first day was dry but overcast, and our only problem with getting wet was in wading across the many small tidal creeks and rivers that cross the track. On the afternoon of our second day, it had started to rain. Not much, but we were crossing an area of rocky outcrops and the rain, moss and sea-salt made the ground slippery and hard going. I don’t quite remember what happened. I think that I bent and twisted sideways to avoid catching my pack on an overhanging tree, and that it slipped and pulled me off balance. Whatever happened, my right foot caught in some rock and my knee twisted badly; I remember rolling forwards down the path with my right knee twisted badly underneath me and the searing pain that followed. When I tried to walk on it, I couldn’t. I knew straightaway that I’d done damage, because although I could stand, I couldn’t walk on it.
My Scout friends, being the helpful lot that they were, divided the contents of my pack between them so that one of them could carry me. Luckily we were only a couple of kilometres from where we’d planned to camp that night, and one of our Leaders (also the father of one of the boys) was hiking in from the opposite end of the track to meet up with us.
It would have been a bad night anyway as we were forced to camp not far from a river, and that night the area received torrential rainfall. So we woke up to find ourselves rather cold and very wet. I was pretty stiff and sore by morning, but I forced myself to start moving and I was determined that I was going to finish the hike.
The rest of the gang helped me out. They split most of my pack contents between them so that I would have less weight to carry, and rather than follow the coastal path back we decided to follow the park access road once we hit that point. I limped, I stumbled, I fell and I cried, but I finished that damned hike.
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Our G.P. diagnosed a minor medial ligament sprain and advised the good old R.I.C.E treatment. This helped for a time but I found my knee getting increasingly stiff and sore. Six weeks or so after my injury, when I ended up on crutches due to the worsening pain and swelling, I saw a surgeon for the first time and it was he who suggested an exploratory arthroscopy, as this would allow him to clean up any damage he found then and there. That went ahead the following week. My life was never the same again.
The injury itself had been very minor: a synovial plica – a folding and thickening of the lining of my knee joint that I had torn in my fall. It had become inflamed and scarred – in the words of the surgeon, as he rubbed his hands in glee, “the most pathological plica [he] had ever seen”. The surgery too was very minor: in and out of hospital within a few hours; I didn’t even need crutches afterwards. Far from minor were the problems I had in the weeks, months and years to come. So began my life with Complex Regional Pain Syndrome.
Having the plica removed must have freed things up a bit, but I should have known at that point that I was going to have problems. And problems I had. My knee just didn’t improve. It remained painful and increasingly difficult to bend. With time, I also started to develop a band of colour change across the front of my knee and intermittently my knee would swell in that same area. I saw multiple physiotherapists along the way. I’d make some progress, I’d plateau, I’d go backwards; basically, for a long time I felt like I was chasing my tail. I knew that something was wrong; the physios knew that something was wrong, but nobody had any idea what.
The surgeon didn’t take me seriously. Initially, my knee wasn’t getting better because I wasn’t following his instructions. First I was overdoing things, then not doing enough. Then I was playing it up for sympathy, malingering. I was a typical teenage girl – prone to hysteria and hypochondria. In late 2000, I also saw another orthopaedic surgeon. He barely gave me the time of day, keeping me waiting an inordinate amount of time to flick briefly through my notes and inform me that there was nothing wrong with X’s surgical technique and that I should back to the physio. He didn’t even look at my knee. Finally, I was mentally ill. He offered, somewhere along the line, a referral to a psychiatrist. I refused, knowing full well that the pain was in my knee, not in my head.