Conor was 10 when he was diagnosed with RSD/CRPS. There were no really positive stories around BUT ours is a positive story and Conor is now totally pain free after 2 years. It was a heartbreaking, terrifying, upsetting time for all the family and devastating for the child.
Conor woke up on 12th December with a terrible pain in his left knee and said it was stinging stabbing and like fire. Conor is tough and very sporty and athletic and he first got the pain following a fall doing cross country, however we think that his was the final trigger but that he sustained trauma to the nerve endings below his knee 3 weeks previously at a roller skating party where he spent most of the time falling onto his knees. We got a diagnosis after a terrifying 6 weeks of asking again and again if something more was at play, from here on it was easier to understand and move forward with the help of a fantastic pain specialist.
We tried physiotherapy, pacing, swimming, a healer, vitamins, lithnocain patches and hypnotherapy with varying degrees of success. Conor had to try and do a little exercise each day just to keep the leg moving but there were many many days when he just sat and cried. It was so tough and the pain seldom retreated in the first few months. Nights were the worst and deeply distressing for us all as there was no distraction from the intensity of the pain and it followed a strange pattern at night.
He missed almost a year of school. Socialising became a problem as he missed his friends but wasn’t up to seeing them however I took him into school on some days just for an hour to see them. He was very sad and angry a lot of the time and didn’t like Mum or Dad much as he felt we should have been able to take away the pain.
After a year Conor was doing so so well but any bang on the leg resulted in a flareup and another week buried in pain until it subsisted and when the pain was there it was hypersensitive to touch.
I read about the Lightning Process and decided to look into it. I did two months of research and thought that if we could re-train the pain pathways that maybe we could stop the pain. We visited the head office in London for the free talk before and I thought it would be far too large a concept for Conor to understand but how wrong was I! He instinctively knew what he needed to do and that it was the way forward so we enrolled on a course and did our three days training and I was absolutely blown away by the whole process. It gave responsibility and control back to Conor for the first time and he could influence his health. He has had no flare up since and that was 9 months ago.
Conor is back at school full time and playing for the first 15 Rugby team, he trains on the very hard ground and is small and gets tackled hard. So far he has overcome pain in that leg from a knock without a flare up and he does the LP a lot privately in his own time and uses it for a lot of situations. Next week is the first time he will compete in a cross county race in 3 years so every step forward brings a big smile to our faces and he is the happiest toughest laddie now.
We worry much less and life feels normal again and we are all so so so happy and grateful to have had the wherewith to follow the avenues we did to fight this horrid, horrid condition.
