I have high tone CP and that is normal for me, but in recent years (I am 49) I have had increasing levels of pain. I get to see someone about every 3 months at the pain clinic in my local hospital and they are trying to find the best medication for me, but they really don't understand my condition and with the best will in the world seem to be floundering about in the dark.
I have reached the point where I don't expect them to find solutions for me, but somehow we must get to the bottom of the problem for the next generation to prevent them reaching my age and having the same pain.
I figure that the best people to help me campaign for research in this area are people who either have pain like me or who don't yet, but would rather not have it in the future.
Please respond so that in the first instance I can get an idea of how many are affected.