Kicking CRPS to the Curb

My pain story started in 2015 when I tore my right ACL at an exercise group boot camp. I had a straightforward reconstruction but experienced some numbness in my shin which I was told was a known risk of the surgery. In 2018, I slipped in the bathroom and snapped my ACL again in the same knee, but this time was told I had to use a synthetic graft known as a LARS graft. From the moment this graft was put in, my knee was not right. I was in constant pain, the joint was swollen and hot all the time and I could only bend my knee so far. I returned to the surgeon who dismissed my concerns, saying it needed time to heal and to continue rehabilitation.

In March 2019 I sought out a second opinion and it was discovered via scans that the graft was placed incorrectly and I would never get my full range of movement back which was causing the pain as my joint was under so much strain.

In June 2019, I had the LARS graft removed and bone grafts placed in the bone tunnels, and had to wait 3 months for them to heal before my new ACL could be put in.

In September 2019 I went into surgery for the ACL reconstruction using my patella tendon, with hopes that I would finally have a strong functioning pain free knee. When I woke up from surgery I was in horrendous pain, not even the pain medication I was given in recovery was making a difference to it. I remember crying to the nurses that something was seriously wrong with my leg only to be told it’s just normal post op pain.

For the next 12 weeks I struggled to manage the pain which impacted on my sleep, rehabilitation and my mental health. When I should’ve been working through rehabilitation exercises, I was often crying begging for the pain to go away.

My GP realised this was not normal and sent me to a pain specialist, who then conducted nerve testing on my leg. He diagnosed me with a pain condition known as Complex Regional Pain Syndrome (CRPS). The pain I experience is relentless, stays with me 24 hours day, 7 days a week and impacts every facet of my life. 

Following my diagnosis, I was given a lot of information about my condition, referred to allied health professionals and began treatment to manage the symptoms. 

Over the past 8 months my condition has spread to my whole right leg and into my left leg. It’s exhausting, relentless and disabling. My life has changed significantly. I no longer can walk around the local park, ride the bike with my two young children and I am unable to work. My weeks are now filled with doctors, specialist and allied health appointments. I have gone from being able to manage a household, chase my children and work to being barely able to walk to the mailbox.

One of the hardest things about chronic pain is that because you can’t see it people don’t believe it’s real. I often receive abuse and comments for parking in a disabled permit park which I have a permit for, because I look ‘fine’ and that ‘I’m not disabled’. But I ask what does disabled look like to you? I’m learning to ignore the comments but sometimes, especially on a bad day it really hits hard and I wonder if my CRPS is real too? 

This condition has put a lot of things into perspective for me and has also taught me to speak up. I’ve learnt to also be an advocate for myself and my health. My hopes are that one day I’ll be able to be pain free and join my children on the basketball court again, but until that day I’m going to keep fighting hard to kick CRPS to the curb. 

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