CRPS Dancer

20th Sept 2017

On Wednesday 7th of December 2016 during a dance concert rehearsal I rolled and sprained my ankle as I lost balance and fell off my pointe shoe. I immediately knew I had injured my ankle, it ached, and I had to push through the rest of the rehearsal. I booked in straight away to see a physiotherapist the next day as my concert was on Saturday.

The physio I usually see I wasn’t able to get into, so I saw a new one. She was amazing. She did therapy on my foot, taped me up, and told me to come back after my concert so we could start treating my ankle for injuries. Long story short, weeks went by, I was at physio at least once a week for treatment as the pain was so bad.

We thought I had injured a tendon in my foot. I then got to see a podiatrist who specialised with dancers and pointe and together they decided to refer me to see a sports doctor. During this time, I wasn’t able to weight bear, I was on and off crutches depending on the severity of the pain. The sports doctor talked about wanting to possibly do a cortisone injection into my ankle in hopes that it would provide enough relief for me to continue more intense physiotherapy in order to heal what we thought was a tendon injury.

I raised my concerns about my younger sister developing Avascular Necrosis due to use of cortisone steroids as a treatment for juvenile idiopathic arthritis. They sent me to get an X-ray that came back fine, they sent me to get a MRI that came back showing no damage to any tendons, however I did have some small “red flag” spots on my talar dome joint in my ankle (the exact same spot my younger sister has developed a lot of her ankle issues. This and my family history caused the sports doctor to think I may have had a form of arthritis, so he referred me to see a rheumatologist (luckily I was able to see the same one my sister sees).

Before my appointment I was put on a tablet form of steroid medication used to treat arthritis to see if it would reduce my symptoms. It didn’t make a dramatic difference apart from the horrible side effects. When I saw the rheumatologist in February 2017 he decided the “red flags” in my MRI were some wear and tear and as the steroid medication didn’t provide relief that I didn’t have arthritis. After doing physical exams & talking about my symptoms I was diagnosed with Complex Regional Pain Syndrome (CRPS), something my younger sister has also struggled with in the past.

Fast forward almost 9 months and my life has changed dramatically. I still work full time in childcare which is a struggle some days, but thanks to an amazing team and organisation I work for, they make it easier for me as work is my top priority. I still teach dance each week, however I unfortunately am not able to dance myself anywhere near as much as I could a year ago.

I take a variety of medications daily to help me cope with the pain & sleep. I have a flare at least once a week whether it lasts a few hours or days on end. I have also opened my eyes to this huge community of people who suffer with so many various chronic pain & chronic illnesses. Although some of those may not have the same as me I can truly connect to some of the daily struggles they also face mentally and physically.

I have had to find new passions which have included horse riding and I’m also very passionate about my two dogs Emma & Oscar who we do agility training with once a week. I am very lucky I am able to fight through my pain to work and participate in my hobbies, as I know a lot of CRPS suffers have it much worse than me. I am inspired and motivated to do as much as I can whilst I still somewhat can, and pacing my self is a balance I’m still aiming to find.

I am scared for what my future holds and questions like “what if I can no longer walk or I lose my independence” or “what happens when I have children and I can’t play and run after them” pop up in my thoughts on a regular basis.

I’m very lucky to have a great support system of family, friends, work colleagues, animals, medical staff I see on a regular basis, my 2 dogs & my amazing partner Ben to help me through my struggles, lift me up and help me to remain positive.