My name is Helena Stone, I’m 19 years old and live in London, I am on leave due to CRPS from Loughborough University and plan to go back to continue my studies in 2017.
In 2013, I was an active 16year old and was enjoying the summer holidays post completing my GCSEs. My favourite sport was kayaking and I had just started competing nationally in Canoe Slalom.
In the Summer of 2013 I was in Wales training for a national ranking slalom race, I capsized and sprained my knee. I spent the next two weeks on crutches and didn’t think much of it, but this was the start of my life with chronic pain.
Over the next year and a half I was struggling with my knee and was in constant pain, however there was no sign of physical injury. My medical team at the time were baffled as to why I was still in so much pain. In November 2013 I had a routine steroid injection to reduce inflammation in my knee. Within 24hours my knee had swollen, it felt like someone was grating my skin and my knee had gone a bruised in colour. Within weeks I was unable to walk and on crutches, blood tests had ruled out infection and my consultant was trying to find out what had happened to my knee, that was when I was diagnosed with Complex Regional Pain Syndrome.
Fast forward to February 2016, in this time I had completed my A levels and secured a place at Loughborough University despite being in chronic pain, I had also had been through a number of different treatments. I was struggling with my pain levels at university so I had a ketamine infusion, which is one of the treatment options for CRPS. I came round from the procedure unable to move my leg and in more pain than I was before. Within days my CRPS had spread to my foot and I could barely leave my bed and was reliant on a wheelchair and crutches to get out. I ended up taking leave from university and taking a year out, I didn’t know which way to look I was so upset, this is when I found the CRPS UK support group, it was a life saver. I found people who were my age who had the condition and many people in a similar position to myself. I was able to find out where to go for a wheelchair and also ask about treatments people had tried. It was a massive boost for me and it still is now.
By August 2016 my CPRS was showing no signs of calming down and more treatments had failed. I was having physiotherapy twice a week, regular psychology sessions and reviews with my consultants. It was then that I realised I am going to need a wheelchair long term and I was looking at a life in with this condition. It was hard to accept and everything in life seemed 100 times harder because of the wheelchair, or because the amount of pain I was in. My condition seemed to be getting worse and worse rather than stabilising or getting better. It was in times like this that the CRPS UK support group really helped, I was able to get the support I needed along side my family and medical team. I was able to speak to people who truly understood what its like to live with CRPS.
Contact: Facebook, @LivingWithCRPS1