I used to be a regular contributor to basenotes but have been missing for a while. About a year ago, my son developed CRPS also known as RSD. It is a nervous disorder that is rare and has few treatment options. Last year, he injured his big toe while horsing around with friends. His doctor taped it and said it would be OK in a week or so. It got progressively worse. An x-ray showed nothing so it was assumed to be a fractured growth plate. His foot was casted for a month - all the while his pain got worse. An mri revealed no injury and he was diagnosed as having CRPS (complex regional pain syndrome). His autonomic nervous system is telling his brain that his foot is injured and the brain is sending down pain and circulatory responses. His pain is excruciating. Not only can he not use the foot, he cannot touch it with the lightest object. Moving air is too painful for him to tolerate. He cannot go outside. He must remain in a room with the a/c off and windows closed. The slightest air movement sends him into a screaming fit that lasts an hour. He remains on the sofa with his leg elevated over the back of the couch so that nothing can touch his foot from the ankle down. He is severely depressed and has tried to hurt himself several times. He is only 12 and has suffered more than most do in a lifetime. He sleeps for only short periods of time before being awakened by pain.
We tried physical therapy during the early stages of the disorder. He spent a month in a specialized program where they forced him to use his foot despite the pain. Not only did this not help, but he is now extremely anxious about pain which makes further treatment difficult. Since then we have tried spinal blocks, pain killers, reiki, hypnotherapy and biofeedback therapy. Nothing has worked. We can not travel for more than 10-15 minutes because the car windows must be closed, the a/c off and all vents closed. We are at wits end. This has put an extreme strain on our family as well as on our son.
I have spent hours searching the web and found a lot of good information. The best ideas, however, have come from networking. If you have experience with CRPS or RSD please let me know what has worked for you. You may have a "friend of a friend" who has it and this person may have found a treatment.
I appreciate any ideas you might have. I appreciate your kind thoughts and prayers.
We tried physical therapy during the early stages of the disorder. He spent a month in a specialized program where they forced him to use his foot despite the pain. Not only did this not help, but he is now extremely anxious about pain which makes further treatment difficult. Since then we have tried spinal blocks, pain killers, reiki, hypnotherapy and biofeedback therapy. Nothing has worked. We can not travel for more than 10-15 minutes because the car windows must be closed, the a/c off and all vents closed. We are at wits end. This has put an extreme strain on our family as well as on our son.
I have spent hours searching the web and found a lot of good information. The best ideas, however, have come from networking. If you have experience with CRPS or RSD please let me know what has worked for you. You may have a "friend of a friend" who has it and this person may have found a treatment.
I appreciate any ideas you might have. I appreciate your kind thoughts and prayers.
