Sarah

I was diagnosed with Complex Regional Pain Syndrome at the age of 12. I have now self-managed chronic pain for several years, but it is still part of my life.

My pain began years before my diagnosis. It started as unusual aching and sharpness in my ankles and legs.

The first significant flare up was when I was aged 10. I was unable to walk, and we began to see many specialists. I was admitted to Canberra Hospital, but tests proved inconclusive, and doctors began to say it was “in my head”.

My peers were unable to understand and would often make similar comments. It was very difficult to be so heavily criticised.

With the support of family and physiotherapists, I was able to attend hydrotherapy and regain control of my body.
The pain came back after an illness in Year 7. Without treatment my condition quickly worsened. Despite being confined to a wheelchair I was unable to gain admission to the pain clinics at Canberra Hospital or Westmead Hospital in Sydney.

Only when unbearable pain while traveling on a family holiday caused us to stop at Sydney Children’s Hospital in Randwick did my recovery truly begin.

They were able to assist my admission to the hospital’s paediatric pain clinic. It took many trips to Sydney but was worth the effort. I had many different specialists working on my recovery as a multidisciplinary team, consulting with me in the same room. Although I was only 12 they were able to explain what was happening in my body and define causes and treatments.

This knowledge provided me with a solution. I was treated with hydrotherapy, physiotherapy and Cognitive Behavioural Therapy, both during my visits to Sydney and back in Canberra.

These therapies and the discipline I learnt for daily exercise and mental strategies allowed me to become self-managed without medication, and have allowed me to live a full life.

I am now 19, an engineering student at ANU and working in the aquatics industry. I enjoy recreational sports and have recently become an advanced open water diver.

I feel empowered and now want to be an advocate for young people in pain.