I have not updated for a while on Molly and how she is doing with complex regional pain syndrome. Most of the time it is because I try to ignore it in our lives. Which isn’t too hard to do, unless she is having a flare, then it is pretty much all hands on deck to try to get rid of it wherever possible.
Forgotten what it is?
Complex regional pain syndrome is a condition where the sufferer is plagued by consistent and debilitating pain. It often affects one or more limbs after an injury or trauma. The pain can be excessive (my daughter describes it as being like knives being plunged into her) and often the affected limb will swell or turn a rainbow of colours whilst undergoing dramatic temperature changes.
It is rare and misunderstood.
There is no real cure, but often sufferers can go into remission and stay there, especially children.
After Molly’s first major flare we thought it had gone for good. This year however it has reared its ugly head several times and we have been forced to act aggressively and quickly to ensure the flare doesn’t take hold or dehabilitate her.
How do we treat it?
In short we cause her pain.
We keep the limb moving.
When her foot was affected I took her surfing, when her wrist was flaring we went out to bowl. You can use medication, Molly has been prescribed morphine in the past, but for us, we have made a choice to treat this by physiotherapy and desensitization. It can take some time, but for Molly it seems to work.
This year she slipped and hurt her foot, this led to 3 months of limping, then to crutches and then into a wheelchair for short bursts of time. All she did was take a tumble. I still remember when I saw her sit in her wheelchair and a smile broke out as the pain eased momentarily – my heart broke, no one wants a life of pain for their child.
On a practical note, living with CRPS in a family of three can be challenging. It affects everything. We were looking to book a holiday when Molly suddenly couldn’t walk more than a couple of steps unaided. We planned to hire a wheelchair, but luckily for us, she took responded well to therapy and by the time we went away she was dependant only on crutches as her predominant mobility aid.
Physio, counselling, and an enviable strong mental state of mind meant Molly managed to throw the crutches away in September, although this time, her Doctor warned it may not be forever.
He was right, a few weeks later her wrist connected awkwardly with a door frame and the pain was so excruciating that she couldn’t sleep.
Again, a determination to join in, to be in the school sports team, meant Molly has fought the pain in her bones and after 6-8 weeks the pain is almost gone.
My girl is a fighter – but I knew that already.
People need to understand CRPS, it has claimed lots of kids and its long term impact can both mentally and physically. When you see people in wheelchairs and crutches, take a moment to comprehend how different life can be.
For us, once again, CRPS is simply in the background. Molly has regular sessions with a OT so she knows what to do if it flares again. I live on tenderhooks when she flies around the trampoline and runs up and down the street. Whilst I love seeing her so at ease, I dread the stumble that may come and put her back, fighting immobility.
But for now, all is good.