3 things I’ve learnt from 8 years with CRPS

8 years ago, today, I was lying in a hospital bed complaining about the tasteless food and awaiting a doctor who could find out why I had such extraordinary pain in my wrist. After a day of more tests than I could count, Dr Y Mahomed walked into my room, introduced himself and suggested I had a rare condition, which is diagnosed only by exception, called Complex Regional Pain Syndrome (CRPS). I let out a huge sigh of relief! Finally, after years of trying to work out what it was, it had a name, a form and a proposed treatment programme!

2 years prior, my right wrist had become sore, just out of the blue it seemed. I presumed it was a ligament, tendon or muscle. My GP sent me for scans and a ganglion was discovered. I was referred to an orthopedic surgeon who recommended surgery to remove it. The surgery was simple enough and I followed the post-surgery recommendations but the pain became worse not better. More time with the surgeon and my physiotherapist didn’t shed any light. I was referred on again to a specialist orthopedic surgeon in Johannesburg. After a short consult, he recommended a bank of tests which found nothing but a huge amount of inflammation. Another surgery was recommended and, again, post-op instructions followed. The pain intensified further. The specialist couldn’t explain it but recommended I allow him to either remove all the nerves in my arm from the elbow down or fuse it.

I walked into the hospital parking lot and burst into tears, curling up in my mum’s arms. I was devastated, I was in more pain than ever. Nothing relieved it, no painkiller anti-inflammatory or cortisone. I could barely move it. As an artist and pianist, I couldn’t imagine being without my hand. By this stage, I was in my last year of my degree and had learnt to use a dictaphone to complete my exams but working had become nigh impossible. I couldn’t see a way forward but I knew more surgery wasn’t it.

I spoke to every person recommended to me, psychologist to kinesiologist and everything in between. We ruled out so much but still, the pain persisted. God intervened, in an answer to prayer, a friend had lunch with my mum and recommended one more doctor, Dr Sacoor. My appointment with him was so different, I remember sitting opposite him with my test results covering his desk, my head splitting with a migraine and my face grey with pain. He looked at me and then at mum, and commented he could see our pain, the length of our journey but he was going to try and find out what was wrong but we had to give him time. He put me in hospital for 2 days of tests and then he sent in Dr Mahomed.

The six months after my diagnosis were full of complex emotions. The medication caused a host of side effects and I had to change to cymbalta, take chronic anti-inflammatories and naramig for the migraines. My hœmeopath, Dr Makris, was essential to getting me back in balance. Despite the setbacks and coming to terms with a chronic illness, I was filled with hope!

If I could talk to myself then, with what I’ve learnt by trial and error, I’d share these three thoughts:

1. Keep fighting for the life you planned: You’re worth fighting for, keep going, through the pain and the fear, through the doubt and unknown. Keep asking questions, keep doing your own research and challenging your doctors. The right ones will understand you and work with, if they don’t, look for a different doctor. I am now able to draw, play piano, ride my horse and work. My pain is vastly reduced and the future bright. I’m so grateful God saw that to be my healing and know that it’s not for everyone but every story I read of courageous chronic pain patients highlights the power of fighting and staying positive.
2. Build a team: you can’t do it alone, you can’t be everything for yourself. When you’re the sick one, your perspective will be skewed. My mum was my warrior. She fought for me when I wasn’t well enough to speak for myself, when I was tired, when the pain overwhelmed me or those treating me weren’t doing enough. She and I were supported by a network of friends and family who stepped up, prayed with us and loved us. My hœmeopath, specialist and psychologist, who were a part of my diagnosis, were amazing working together to help me find a balance. I added a fantastic biokineticist, Bryce Jackson, to this mix. We had to explore the right things to do, the research was scarce but, they listened, to everything I said from my chocolate cravings to migraine lifting exercises. I found support groups online and friends around the world to keep my spirits up. Find your tribe, find the people you connect with and who understand you.
3. Look for the blessings: I had always been a Christian and committed to my faith but being in chronic pain required more from my relationship with God. I was filled with questions, I interrogated what I believed with new vigour and found new truths, new depths to my faith. I found celebrating my small wins and appreciating the little things made a world of difference. Getting to spend time in the sun with my horse, reading a book, spending time with friends, completing a work project, they were all stepping blocks. A day with a pain of 7 not 8 was amazing as was being able to drink milk again! God is now more real, more present than ever before. Through CRPS, He has taught me so much about Himself, myself and living a balanced life. I am so grateful for the lessons.

I still get frustrated, scared, angry, tired, lonely and sad. Having a chronic pain condition reorganizes your life without permission and makes planning tricky. It takes a lot of explaining, forethought and effort to stay well enough. But, 8 years on, I look back and am amazed at all I can do now, how much research is available, how much I’ve gained from it and who knows what the next 8 years will hold! So now I am also hopeful, excited, faith-filled and joyful.