Conor, aged 10, woke up on 12th December 2008 with excruciating pain in his left knee, stinging, stabbing, burning, fire, pins and needles and hypersensitivity are some of the descriptions of this pain. The trigger for this was falling on his knees at a roller skating party. Conor is a highly competitive, sporty tough child who had never had a moment of pain before so we knew it was serious.
Thus our story of CRPS began, the normal round of GP and Orthopaedic Doctor followed. No firm diagnosis, immobilisation in plaster for 6 weeks (which is counter productive for this condition), questions from us, no answers from them but we knew it was serious and felt we were not listened to. Finally a diagnosis and we are quickly passed over to a pain specialist. Confusion and fear follows for us as parents as it’s a scary condition. How do you start to understand how to deal with it at home? Months and months of physiotherapy to mobilise the limb, pain heaped on pain. It was a round of broken sleepless nights watching your child cry out and beg to be helped, fear in their eyes, silent tears streaming down their face wishing for it all to end, every day bringing the same pain. They blame you for not being able, as a parent, to take the pain away, no promises, no miracle cure, drugs with nasty side effects, doctors, healers, hypnotherapy, desperation in a parents inability to protect her child from this monster condition. No school, feelings of isolation, no longer the sporty happy child part of a group. Friends trying to comprehend an invisible condition we adults fail to understand. Days blended into months and finally we return to school after an academic year away… Year two results in weeks of minimal pain, bearable but never quite gone. The next stage is flare ups, they are silent and just appear for any reason, a bang on the limb or over use, harsh pain, stiffness, hyper-sensitivity and disappointment. Missed school, further explanation, dropped from teams. I referred to the condition as IT and spoke always about beating IT, cruel in its ability to draw you into a feeling of having recovered then in a moment back into the spiral of pain.
Time to look outside the box, fed up with the lack of a final successful way forward, lots and lots of research, having worked as an OT with amputees I recognised the phantom pain they feel as being similar to CRPS. This proved to me that the brain now held onto a memory of bad pain and the computer system needed rewiring to put it simply. This led me The Lightning Process through Horse and Hound where an international rider had used the training for her daughter who suffered ME to great success and thought enough of it to write an article.
I believed brain retraining was the way forward and neuro science is progressing in looking at this area. Conor did a three day training in London and having worried it was too great a concept for an 11 year old boy to understand I was proved wrong. He came home full of confidence, stopped taking his Neurontin and had 11 months pain free where he fought back to get fit and be strong enough to play 1st 1X Rugby and all other sports which was both fantastic and terrifying in equal measure. He did the process as was necessary when he thought it was appropriate. We have had two very unexpected flare ups early in 2012 and we returned to London to do a refresher course one afternoon to be sure Conor is using his training properly to give him the best chance of keeping the condition away.
He now faces the future with optimism and has the tools to feel he has control over his condition and who knows it may just disappear forever! I long for the day that the NHS will take a serious look at what the training can offer to thousands of children and adults and be brave enough to embrace it as a serious tool to help people overcome CRPS and Chronic pain.
Conor has been pain free now for 3 plus years plays Rugby etc. I tell everyone about you and the LP as I believed it changed ours and Conors life …. Thanks Phil