Hi, my name is Chloe, and I am 12 years old.
I have CRPS. Most days I have a burning in my ankle, even a feather touching it can make it feel like it’s on fire. Today has been a good day though.
How I got CRPS.
2 years ago in 2018, I rolled my ankle when I landed on an AFL ball in school training for the Queensland AFL schools cup. It really hurt. The next day was the Cup. I played 6 games in a row. I couldn’t really run but I love to tackle so I did a lot of that. Even though it hurt I didn’t want to let my team down, so I kept playing.
I iced it when I got home and couldn’t really walk on it, so dad took me to the ER. They found a little bone fracture in the bottom of my ankle bone so I was put in a moon boot and on crutches for 6 weeks.
After the 6 weeks it started to swell again. It was really odd. The doctors said that can happen and the best thing to do would be to start using it again. So I did. It always felt a bit weird, some days it would hurt so much and others I could walk fine, I could run, then the next day just trying to walk would make it balloon up. It hurt playing netball every time I landed on it.
I made the district netball team and I played defence which I loved. We started training a lot and the pain started getting worse. Every now and then my foot would change colour, go purple or pink, like a Dalmatian but a coloured one.
I started having my ankle strapped so I could play, and icing it after games. I’d take anti-inflammatories but they never really took the pain away.
I made the Regionals Schools AFL team which was the best thing ever. I played Ruck as I was really tall for my age. My dream was to play for the Gold Coast Sunsets. We trained hard, it was so great, and I just kept icing and strapping when it got really bad.
We won the Queensland State Schools Championships. It was so amazing, I loved being in a team, I miss it a lot.
When we got home my ankle was really bad. We went back to the ER and said how I’d had that fracture but not sure why it was still really sore if it had healed. They did another Xray and said the fracture had definitely healed, so it must just be another sprain, and told me to use a moon boot for a few more weeks till it felt better and then to keep up walking on it to strengthen it.
It never did feel better.
My foot started going cold for no reason. I remember being really scared one night as I couldn’t feel it, it was cold and a weird blue.
My mum got really upset.
A few weeks later I played at a Regional netball tournament and landed hard on my ankle. The pain was so bad. I couldn’t stand up. The medic got me off court and told me to ice it as it was badly sprained. So I did. I wore the moon boot again.
At school, the teachers didn’t believe I could be hurt again. No one seemed to really believe any more that it hurt me as much as it did, and my friends started being a bit mean about it.
A month later I made the Regional Schools Rugby League team. This was awesome. I’d never played before. They’d give me the ball and tell me to run straight through the middle, so I did. The pain was giving me this feeling of anger in a way, not at anyone but the more it hurt the more I just wanted to push it, maybe to see if the pain would eventually stop. It didn’t.
Then I played at the QLD State Schools Rugby league Championships. Some of the girls were huge, I was scared but also excited. My ankle was really burning so I was icing between games. Then on the 2nd day, I made a great tackle. As I was getting up the girl I tackled rolled over my ankle. The pain was something I had never felt before. My whole leg screamed at me, my leg was on fire, I just wanted to scratch it to the bone to make it stop.
We went to the ER again, and the doctor wasn’t very nice. He did an X-ray and it came back clear. He laughed at me when I said how much it hurt and that we were wasting his time as the fracture has healed. He said the best thing I could do was to walk on it, and that I was making it worse by being upset about it.
My mum made a complaint, surely there was more to why I kept swelling, changing colour, going cold, and that pain, the burning. Within the week I was seen at a hospital with an orthopaedic specialist.
She ordered an MRI on my ankle. She also told me that my pain is because I had developed a thing called CRPS.
The MRI results came back. I had had a high ankle sprain, most probably from the very first injury, and due to it being missed it had caused syndesmosis (a sprain which involves the ligaments that bind the tibia and fibula). X-rays don’t diagnose ligament damage. When I think about this, I think about that doctor who laughed at me, who never believed me.
I had tightrope repair surgery 10 days later.
When I woke up. The pain was so bad, I passed out 2 times. I wanted to be dead. I wanted them to just cut off my ankle. I spent 2 weeks at home wishing I could just die. It hurt so much, my mum had to carry me to the toilet. And feed me, everything hurt.
While I was at home recovering, my friends went around my school and told everyone I was faking it all, and everyone stopped talking to me. I missed my graduation and the school never asked why.
My mum got really upset again. I told her I was ok and it didn’t matter. But it did.
It’s been almost 1 year now since surgery. I do physio for my ankle and they are really nice.
I started high school this year which I really liked.
4 weeks ago after doing weights at school, my arms went all stiff, it hurt so much. Then I started getting really bad tummy pains. And headaches. I felt so dizzy. Then I couldn’t breathe properly. All I could do was lie in bed as it hurt too much to move. It started feeling like my heart was being stabbed. I had electricity running through my chest, around my heart and in my arm.
After 3 weeks of no one knowing what was wrong with me, and mum and dad asking the hospital to work out what was happening, a specialist who is really nice said my CRPS has spread.
I spend almost a week of each month at home because of the pain.
I just want to be able to play football. I want to run around. I just want to be 12.
At the moment the country is in quarantine due to COVID-19, and the only good thing about that is no one can do sport, not just me.
Oh, and I got Mr Pickles, my kitten. He has made things so much better, he makes me happy. But I miss my old self. I miss so much.