dejerine
01-30-2009, 04:22 PM
AT one level, it was a huge relief, my first experience, years ago, of personally talking to someone else with central pain. Finally, someone who could relate. However, he kept at it. He was weeping, frantic, and somehow expected me to help him. It was like two drowning people at a swimming pool, each trying to grab onto the other to try to get to the surface.
He was hysterical, and assumed that no matter how bad my CP was, it couldn't possibly be as bad as his, so we never compared notes, as I had hoped. He did not have CP on the face, inside the mouth and nose, and did not have it in the eyes or dura. Otherwise, there were similarities. He had pins and needles, lancinating pains, and his muscles were very crampy. He burned (worse with light touch or thermal change) and couldn't dress normally for his job (lawyer). His skin was hypersensitized and the best he could manage was a singlet and shorts, no shoes. He wept for two and a half hours. I listened. A sense of futility followed the whole thing. He was absolutely the last person who wanted to hear about my symptoms. And the chilling story of how his life had fallen apart reminded me of many things I wanted to forget.
Frankly, it is sometimes scary to talk to others who have the same thing. Their disintegration is somehow evident and introspection causes fear about how one might have changed.
I have long been of the opinion that those with severe CP are NOT the ones who can or should lead the fight for more research into central pain. Mary Simpson is an exception to this, but for the most part, I think it is true. For myself, the solution has been the avoiding of stress, as much as possible.
If a psychiatrist is to be involved, I actually think their first approach should be to counsel the family. To a large extent, the family determines how well the person copes. Just as one must accept that a person in a chair cannot go up stairs, the world must accept that someone who is burning severely to touch must dress differently. If movement hurts (kinesthetic dysesthesia is present) or severe muscle cramps are present, demands for activity must be limited. This is rather obvious with regard to the wheelchair, but it is not so obvious for pain.
He was hysterical, and assumed that no matter how bad my CP was, it couldn't possibly be as bad as his, so we never compared notes, as I had hoped. He did not have CP on the face, inside the mouth and nose, and did not have it in the eyes or dura. Otherwise, there were similarities. He had pins and needles, lancinating pains, and his muscles were very crampy. He burned (worse with light touch or thermal change) and couldn't dress normally for his job (lawyer). His skin was hypersensitized and the best he could manage was a singlet and shorts, no shoes. He wept for two and a half hours. I listened. A sense of futility followed the whole thing. He was absolutely the last person who wanted to hear about my symptoms. And the chilling story of how his life had fallen apart reminded me of many things I wanted to forget.
Frankly, it is sometimes scary to talk to others who have the same thing. Their disintegration is somehow evident and introspection causes fear about how one might have changed.
I have long been of the opinion that those with severe CP are NOT the ones who can or should lead the fight for more research into central pain. Mary Simpson is an exception to this, but for the most part, I think it is true. For myself, the solution has been the avoiding of stress, as much as possible.
If a psychiatrist is to be involved, I actually think their first approach should be to counsel the family. To a large extent, the family determines how well the person copes. Just as one must accept that a person in a chair cannot go up stairs, the world must accept that someone who is burning severely to touch must dress differently. If movement hurts (kinesthetic dysesthesia is present) or severe muscle cramps are present, demands for activity must be limited. This is rather obvious with regard to the wheelchair, but it is not so obvious for pain.