Hi there, my name is Rose and I live in Geelong, Victoria, Australia. My CRPS is from my mid left thigh down but more aware of my left side.
Back on August 11, 08 I dropped a road scooter on my leg and smashed it. The ambulance officer (ambo) thought I had only sprained my knee. She came to check on me in hospital after the first lot of scans which was x-rays and I told her it was smashed and I needed to have surgery. She didn’t believe me and had to ask the nurse if that was the case which it was. I was diagnosed with a depressed tibial plateau fracture, zig zag break across the tibia, damage to at least half the cartilage, compartments syndrome I believe and bleeding in the knee. I had surgery the following day and had a long plate and about 10 screws put in. From what my boyfriend tells me I was close to amputation and some days I wish I had an amputation. I was in full-time care until October 15, 08, 2 days after my birthday I finally got home.
All I’ve my life I had dealt with mental health issues and some chronic back pain since I had my son. I thought I knew what pain was but as it turns out I didn’t. I now know what pain is. Back when I was still in care no one knew why I was in so much pain after the accident. I looked into having my metal taken out as I believe that was the cause of my pain. The hospital was prepared to take it out but I decided to get a 2nd opinion from the surgeon who did the surgery originally privately as my care is covered by traffic accident commission who pays for injuries and deaths that have resulted from car accidents. He referred me to my first pain doc who then diagnosed me in December 09. I was just glad that something could be done even though I didn’t know exactly what it was called until at least a year or 2 later I saw it on paper work and decided to google. I had no idea what was going on and didn’t know it was all normal. I spent a lot of time in the emergency department with it because I just didn’t know.
Even though it took me a long time to do my research and to get in contact with others with it I’m glad I did. I was on a lot of medicine back then and in the past 2 years I’ve come off them all. I’ve learned what medicine are best for it and what to avoid now. I thought that I needed all those medicine for the pain but have learnt that I didn’t. I do regard myself as being low pain because I no longer need and want medicine, even though some days it would be great to help but I always get through it.
This year I decided to go to the gym to gain and maintain muscle loss and to lose some weight. I have lost over time anyway but I thought I would give it a try. I now love the gym and how the exercise helps me in so many ways. Since I’ve started to exercise, my current record of walking in one day is 11 kilometers no flare which is amazing for me. I’m hoping one day I can beat that.
On May 21, 2015, I decided to do the Flinders Peak hike to the top of the You Yangs, a local mountain range near me with a woman’s group. It took us a while to make it to the top and I had to use trekking poles. We all made it to the top and were amazed that we all did it. I hadn’t done it since a kid and there were a hell of a lot of stairs to get up. I was sore for a few days after it but nowhere near as bad as I expected.
The hike was on a Thursday and my flare hit on the Monday. We all thought, “Oh it will be a typical 2 week dystonia and pain flare like in the past.” But I’m now at 17 weeks and counting being in the dystonia flare. The pain isn’t too bad, and hasn’t been, which is good but as you can understand I’m going nuts. I miss the exercise now. I’m waiting to have Botox and a nerve block to help bring me out of the flare. Over the years my attitude has changed from not wanting to do things and needing a wheel chair avoiding walking and so on to now.
I want to do another hike but I need a few months break out of this flare first. But I’m now eager to exercise and won’t say no to things but unfortunately, now, I have no choice. As far as treatments I’ve had 7 nerve blocks varying results. The last one was failed where he hit a nerve and I flew even though I was sedated at the time. Since then I’ve became more aware of my left side.
I have since been diagnosed with trigeminal neuralgia in the face which I believe is as bad as CRPS. I’ve also had 5 day inpatient ketamine infusions which triggered some psychosis and didn’t work, so I refuse to have it again. Thanks to the weekly chat, it’s helped me decide what treatments I do what to try and what I don’t want. I am now refusing to let pain stop me from moving on in life.
The pic I’ve included is from the day of the hike at the top.