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Old 03-11-2007, 11:35 PM
mommyjen mommyjen is offline
Junior Member
 
Join Date: Feb 2007
Posts: 31
15 yr Member
mommyjen mommyjen is offline
Junior Member
 
Join Date: Feb 2007
Posts: 31
15 yr Member
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Just playing devils advocate for a moment. Why does it matter what he calls it? Nothing is really known or set in stone with RSD. A pain syndrome is no less legitimate than a neurological illness. I think a lot of us with RSD have been be littled or under treated. It tends to cause people to be defensive and be less open to ideas that don't seem "serious". A pain syndrome is a serious thing. I have had RSD since I was a little kid and I have been down all the roads. It took a long time to let go of that defensiveness.
I just encourage everyone to be open to what ALL doctors say. Some are right and some are wrong but the fact is there is not enough evidence in any direction to say what rsd is. It isn't in our heads but our heads can hasten or impede recovery, function, pain levels. Our heads are more powerful than any disease or syndrome. It can be a trap to over identify with your condition. If too much of your life is invested in being in pain you won't get better.
If your friends are fellow patients or your socalization consists more of support groups than outside interests then flip that around. For every RSD post or blog entry write to a group you share a health interest in, even if you can no longer participate. SOmetimes the incentive to get better disapears because with out the condition we wouldn't know who we are or how others would know us. It is not a character flaw or a weakness, it is human nature to integrate every chronic situation in our lives into a way to serve us in some way. Every person with and illness can find at least one way to make the disease work for them or else we would all jump off the bridge. SOme people make it a way to reach and educate others, some use to to keep people close, others to push them away.............
I encourage people to take an honest look at how you make it work for you ( a normal natural thing to do! Nothing shameful about it!) and then be sure you have other ways to meet that need in the event that you do get better. It is hard to keep it all in balance and we rarely ever do but just always stay aware of the tendancies and traps.
The research on chronic pain treatment is very tainted due to the fact that Doctors don't treat the psychology of chronic illness. I have know patients who get a SCS and for the first 6 months they feel great. Then they realize that all thier friends were sick and now they don't have anything in common with them. They suddenly have to work after years of being home. People don't check on them as much. The world gets very bid very fast. Because they feel ashamed of wanting the life they knew best the SCS suddenly doesn't work anymore or the don't pay attention on the steps and fall down and get hurt again........ Feel all that is normal and doesn't mean they were faking all along or that they enjoyed being ill. But we have been made to prove we are in pain and beg for attention that we wouldn't never admit that to the doctors!
Some much is out of balance in the treatment of RSD, try to keep an open mind and an open heart. I hope this is not offensive to anyone. Believe me it comes from a caring place of MUCH experience. Blessings
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