Today I spoke to a friend of mine whom I met when Jed was diagnosed. She knows a lot about CRPS.
She mentioned that a family member is to have an operation in a Cape Town hospital and they are covered by one of the top medical aids in the country.
They received their admission number with notice of complications, a few things that could go wrong after the op, mostly common after op ailments which one should be aware of, weakness, numbness, pain.
The last point caught her attention, it says
“Severe pain, stiffness and loss of use of your knee (complex regional pain syndrome). The cause is unknown. You may need further treatment including painkillers and physiotherapy. Your knee can take months or years to improve.”
Let us say that they do not know what they are talking about?
Let us say that they do not know how to treat or how to medicate?
But let us also say that we are happy they mentioned CRPS, a great start.
They could maybe google or ask one of us, because with all due respect, us CRPS moms are the real experts. We have researched, we have read, we have questioned, we have fought, we have studied, we have asked, we have ranted, we have shared, we have experienced all the traumas of our own unique CRPS journeys.
Doctor may one day admit that we know more than they do about this complicated insane disease. They should believe the pain our kids are in. I do not think anyone who has not been there knows the kind of pain these young kids have to endure.
Our orthopedic specialist was sure he would never see another CRPS kid, he had never seen one before, that was a year ago, he has now diagnosed three.