So today came, as it was always going to do. We met the physio and the pain specialist consultant. They confirmed what we already knew, that Molly has a condition called Complex Regional Pain Syndrome.
Which is why she limps rather than walks, why she needs crutches to carry her, why she whimpers when we touch her arms and legs.
Now we have a diagnosis we can learn to move on, and get her moving again. I ache to see my daughter run again.
What is Complex Regional Pain Syndrome?
CRPS is a relatively unknown condition.
It is a neurological disorder that is diagnosed after a period of consistent, intense pain.
The pain is described as burning, aching and stabbing. For my daughter, her right arm aches day and night. Her left foot is agony when put to the floor and often she complains that it feels like someone is stabbing her. Her right leg hurts from om knee to ankle.
Put simply, she is never not in pain
All of her affected limbs are sensitive to touch. I have to be careful when hugging my daughter as to not increase the pain. Yesterday I caught hold of her hand and she cried because my touch hurt her.
It usually develops after a trauma of some kind (ie a fall). In Molly’s case, the consultants think her CRPS was triggered by Severs disease.
It is a pain which often puts its sufferers in wheelchairs, on crutches and in extreme cases bed rest.
It is an arse of a condition.
And that is one plus, CRPS can be put into remission with the right approach and attitude.
For us, Molly is going to attend physio at least once a week and see a psychologist to help her manage the pain.
The key is to desensitize her pain, to reteach her brain that her body is not been attacked by touch. Today I watched as she whimpered whilst being asked to stroke her own leg for 10 seconds, it was her first touch on the way to recovery. We have been warned it will get worse before it gets better. And only Molly can bear that pain.
As I said it is an arse of a condition.
But we will beat it.