My CRPS started in March 2016 after what was supposed to be a routine surgery to resolve severe Compartment Syndrome in both of my legs. I was 4 weeks post op and was following my surgeon’s orders to the letter. Lots of elevating my legs and rotating ice packs to help with the swelling, wearing compression socks, physio, water therapy as soon as I was allowed too, and most importantly increasing my walking to a point where it was back to normal.
All was going great until one afternoon I decided to go for a walk. 600m into my walking track I started showing the same symptoms as I had before surgery and pain I felt was inexplainable. The realisation hit that the surgery may have failed and I started to freak out. Normally the pain would ease after about an hour but this time it didn’t. My legs were on fire. I booked an appointment with my GP explaining everything and she told me to see my surgeon ASAP. I got in a few days later. Little did I know this was going to be the beginning of quite a downward spiral.
My surgeon told me it was too soon to suggest anything and that I had probably had a slight bleed from overdoing it and would just need a few more weeks of bedrest. I then went and got ultrasounds done and it was realised the surgery had not changed anything. The Sport & Exercise Medicine Physician that originally diagnosed me basically supported what my surgeon said and told me to come back when I was past 12 weeks post op to organise another pressure test in my legs to see if the compartment syndrome was still there.
As my job involved quite a bit of manual labour, I knew there was no way I could go back to standing on my legs for 40hours straight. I went to my bosses who had originally been quite understanding of me taking off the time to try and work out if I was able to come back on light duties as there were previous staff these allowances had been made for as money was starting to get tight. Having to take 2 months off and also having a $10,000 debt to pay for my surgery was starting to take a toll on me. My boss flatly refused any sort of resolution to coming back for shorter times and when I asked them to provide me with the reference # they had gotten from worksafe I was denied. My bosses were not returning my phone calls or messages and made no attempt to find out what was happening.
So I started searching for a job and luckily found one within a week and was a desk based job so I wasn’t going to be causing any further damage to my legs and would be doing more admin based stuff which eased my stress knowing I would have money coming in again. Thankfully my new boss was understanding and was happy to let me rearrange some of my hours to be able to make Dr’s appointments as I explained why I was making the career change when they first interviewed me.
Finally, 12 weeks had past and I was able to go back to the specialist. In this time the weather had cooled. I was getting extreme discolourations, pain that was so constant and intense it left me in tears when I was by myself, I was getting cramps that would leave me paralysed in pain unable to talk or move. I was spending most of my time outside of work in bed, depending on crutches because whenever I would go out as my legs would start playing up. I explained all of this and more to the specialist who admitted my surgeon hadn’t actually completed the full surgery and then the bombshell, I was showing signs of complex reflex pain syndrome (CRPS). That appointment changed my life forever as I was aware of CRPS before this. I understood what it meant for me to have this.
I was then referred to a neurologist. He told me there was nothing wrong with me and that it was all emotionally and psychologically based and to go see a psychiatrist…even stating he couldn’t even see the reason why I had surgery and that if I still had pain in 6 months to come back and he would take me seriously. My surgeon did not contact me again after this as he was the one who referred me. I then proceeded to go see a dietician for tips on foods that helped reduce inflammation and a new neurologist for a second opinion. After leaving the neurologist appointment I finally was going to have a referral to a pain specialist.
It was now november 2016 and I finally had my first appointment with the pain Dr. He put me on Lyrica & Endep and referred me to a pain psychologist as by this point I was an emotional wreck. I felt like the life I knew was gone forever and that I had no reason to live. The pain was a constant reminder of all this debt I was trying to pay off and made it almost impossible to complete the most basic tasks. Not to mention the side effects I got from the lyrica were horrible. Dizzyness, weight gain, memory loss, nauseas & fatigue to name a few…all for very little improvement that I could see in my pain levels. My Dr then upped my meds to double what they were and I must say this sent my emotions into overdrive. In this time I had managed to strain both of my hamstrings from picking something up off the ground and was spending 70% of my time on crutches.
My sensitivity just seemed to be getting worse. I asked him what other things I could try as I had already implemented an anti inflammatory based diet and essential oils and hydrotherapy at this point. I was sent to a rheumatologist who then explained I was showing all the classic signs of Fibromyalgia as well. GREAT…Not what I wanted to hear. My pain Dr suggested I start looking at lumbar sympathetic nerve blocks and to try physio.
My GP sent me to one at the clinic where she worked. Little did I know my physio was going to change my life again. After our first meeting he had given me hope for the first time explaining he would be using a device called a “Physio Key” which was non-invasive and would not need direct contact with my legs as I couldn’t handle the sensation of them being touched. After 3 sessions with him I was starting to notice little changes. I knew it wasn’t an easy fix solution but my aim was to be off of my medication and moving again knowing it was going to take double weekly sessions which also meant a lot of money, but if it was going to give me normality back I was going to try it.
Fast forward 5 months…I was coming off my meds. I was mentally dealing with what had happened and my pain was almost halved. Since then I have continued to slowly improve to the point most days my pain doesn’t get higher than a 4. I have been able to maintain walking short distances and swimming 3-4 times a week and can actual contribute to chores around the house now which doesn’t leave me stuck in bed for days recovering.
I now can go weeks without having a flare and am considered by most to be in some form of “remission”. I still struggle with fatigue and exhaustion but looking back I have reached some massive milestones which has given me so much motivation to keep going. I have an amazing support group in Geelong which I attend monthly with other fellow people who have CRPS & Fibro and they have also helped me so much mentally, just having people who understand completely.
I wouldn’t wish this on anyone. I am 26 and this has pushed me to rock bottom so many times. I know I am a fighter and will continue to fight this. It has taught me so much about the person I am and sadly has shown me how little the medical world understands and knows about this condition. It makes me want to start studying medicine, just to help spread awareness and give this condition the recognition it needs to hopefully one day find a cure.
Just over 18months post the surgery that changed my life I understand I will never have the life I had before my CRPS and I will always have pain and I have accepted that, but it doesn’t stop me from constantly researching to try and help myself and others.
Shiobhan Dimond 26