Katia Lenzi

I was nine years old when I damaged the ligaments in my left leg in a hurdling accident.
After a year of treatment my leg hadn’t healed – in fact the pain had worsened and I was diagnosed with chronic regional pain syndrome. This was later re-diagnosed as central sensitisation, a hypersensitivity of the central nervous system.
Following my diagnosis, I attended the pain management clinic at the Royal Children’s Hospital in Melbourne for a year but after this the pain spread and I developed other problem areas in my body.
I had always been a very active child, and I found that having constant pain inhibited me from simple things like being able to play. I had to give up basketball, tennis and squad swimming.
I feel like I lost most of my adolescence in that I was unable to go out and socialise as my friends did. It was a real struggle to get through year 12 and complete my tertiary studies successfully as I am an aspiring musician. I had to change high schools in order to get the extra care and flexibility that I needed.
The most difficult thing for me was the sense of isolation that I felt from all of my friends and loved ones. I truly felt alone and as though nobody could understand my situation.
This affected my mood and I found that the less that I could do, the less I tried. This obviously lowered my self esteem.
I cannot say enough how scary pain is when one does not understand its cause, or how to treat it. I developed night terrors about pain and situations in which my pain would limit me. In my experience, the psychological effects of pain are just as intimidating as the physical ones.
I experienced many false diagnoses and was referred to many different specialists to “fix” my pain. I endured many treatments which worsened my condition and increased my pain levels.
I also saw numerous health professionals who questioned and denied the existence of my pain and alluded to me being a malingerer. For 11 years, my parents and I tried to find a successful treatment or cure for my pain. When each inevitably failed, I felt that there was simply no successful treatment available.
I was repeatedly told that there was nothing medically wrong with me, and this, in a sense, created an adversarial approach to doctors. In hindsight, it is understandable that my chronic pain was not easily identifiable in the same way as an acute condition.
Finally, I discovered the Barbara Walker Centre for Pain Management at St Vincent’s Hospital and in the past 18 months I have gained a sense of independence that I have never before had.
The centre acted as a vessel through which I was able to learn about my pain and take a holistic approach to improving it. I like the fact that I was finally able to empower myself by taking steps personally to improve the way that I felt and, more importantly, I felt like I had some control over my future and my pain levels.
I recently was able to go on a trip around Europe and Malaysia for nearly two months with my boyfriend. This holiday was an experience that I never thought I would be able to either cope with or enjoy. I walked about 10 kilometres every day, swam and rode a bike. I had an absolute ball and am still surprised by what I am capable of now.
I think it’s important to mention this trip because people should know that when chronic pain is well managed and understood, the patient can still have a good quality of life. Our situation is not hopeless.