My name is Ashleigh Webb and I was diagnosed with CRPS in mid-2014. My story begins in my ex-workplace, a large veterinary hospital, where I suffered a bilateral tendon injury. Working as a veterinary nurse was always taxing on the body, but never had I dreamed that a simple tendonitis would result in anything more than a few months of rehabilitation. However, after 2.5 months of constant physiotherapy (with the closest local that I could find) and GP appointments, my tendonitis symptoms had all but passed, but I remained in constant pain and discomfort in a way that I had never felt before. It was like my insides were alight with electricity, and I would wake up in the middle of the night to find my arms flailing about, of their own accord, as though they had a life of their own. My physiotherapist tried various methods of treatment for my new pain, but nothing worked.
So, I decided to seek a 2nd opinion from my usual physiotherapist, whom I trusted but who unfortunately worked 45min away from my home (and when you are struggling to drive your manual car even to the local supermarket because of arm spasms and cramping, driving twice per week to physio appointments 45min away was an impossibility). It took him 2 sessions to realise that my initial injury was not the cause of my new pain, so he performed a simple test that resulted in my diagnosis. He had me lie flat on my stomach, while he manipulated and massaged my arms, shoulders and upper torso. I reacted violently – wincing in pain. He then palpated the bottom of my feet using the same amount of pressure that he had applied to my arms, and it felt like a feather touch, barely noticeable. This hypersensitivity in my upper body was the key to my diagnosis. He wrote a letter to my GP, and within a week I began my first course of nerve altering medications and had a pain specialist appointment booked.
As I was diagnosed within the first 3 months of onset, my body responded positively to the medications and my pain levels were reduced by approx. 80% after the first month of treatment. I think constantly about where I would be now, if I had not gone to get a 2nd opinion when I did. After my first 3 months of treatment for CRPS, I realised that Veterinary Nursing was no longer a viable career choice for me, and so I was forced to quit and find a new path. This would prove to be the hardest part of my journey. When already suffering from constant pain, depression and anxiety – being forced out of a career that you love, and have studied hard for, is an excruciating experience. My new job, as a Supervisor of a pet store, doesn’t give me the same satisfaction as Veterinary Nursing did – but it does allow me to work the hours that I need, with minimal strain on my body, and I still get to use some of the knowledge that I studied as a Veterinary Nurse. Best of all, I discovered my love for AQUARIUMS and the calming effect that watching fish has on me, particularly during times of anxiety.
Throughout the war that my body is waging, I have had deep lows – where I felt like I wasn’t contributing to my household, where I felt like I was a burden on everyone that I knew and where I wanted my life to end. However, I have also experienced kindness and acceptance from those around me, and I am slowly learning to fight my battles and accept the smallest wins. Slowly, but surely. As my condition affects my upper body, a lot of my daily routines were compromised. Cooking became a painful chore, washing and dyeing my hair an exhausting task and my favourite hobby, sewing, was no longer something that I could do for hours on end.
The medications that I take ease the bulk of my symptoms, including anti-convulsant nerve suppressants which are used to treat various forms of neuropathic pain, and they include; swelling of the arms, skin blotching and redness, spasms, cramping, fatigue and nerve pain. However, the prescribed drugs can be a double-edged sword, as they each have their own side effects – some of which are as serious as the disease they treat. The opioids that I take for pain management cause me severe constipation, and the combination of opioids , nerve suppressants and anti-depressants (used as alternative pain relief) makes me extremely lethargic and prone to physical fatigue; which also means that as a side effect of my journey, I have gained 12kg. You would think that living with chronic pain would mean that I am too preoccupied to concern myself with a bit of extra weight – but, like any female, I always find time to worry about my physique and feel self-conscious about myself! I am lucky to have a partner of 13 years that I love with all my heart, who was unfortunately diagnosed with Fibromyalgia 12 months after I was diagnosed with CRPS. I also have my mum and my step-father, all who love me for who I am, even when; I feel self-conscious, I act out because of my medications, I am too tired for socialising, and when I am just downright in pain and need a hug, a free meal or someone to spoon me as I sob.
My story has no end, and my war will go on for many years to come. I am but a mere 3 years into my diagnosis, so I live with both the fear of my CRPS getting worse – and the hope that new treatments might emerge that would give sufferers, like me, better relief – or even a cure. It is estimated that about 32,500 people in Australia suffer from CRPS, which might only be 0.1% of the population; but we fight against our own bodies every day – and we deserve some relief. Thank you for your support xo