Cheryl Scott
I have RSD. Never heard of it until i got it.Didnt understand it for years either. kept thinking it would go away. it gets worse and i often feel like the best of my life is over. I am sensitive to drug therapy. I am trying to have a spinal cord inplant done. I have been told it may change my life. Less Pain.The pain is not only intolerable it it effects my moods my ambition and general outlook on life.I have found it amazing how few doctors know much about this. I know more about RSD than most of the doctors I have seen.I think the worst response I got from a doctor was when I tried to explain the pain to him and he told me it didnt sound like RSD to him and that if I lost weight the bulk of my problems would go away.I am told the more you use the effected limb the less hold RSD will have on it.It takes a lot of work to use the limb because it is so painful but it is true. I was sick in bed for 2 weeks and my RSD got the worse it ever has. Now I am up and about as much as I can an it is starting to calm down a little.It is so hard to explain how difficult it is to put yourself in pain to help stop the pain from getting worse.It often feels like an uphill battle.My husband is very supportive (thank god)I couldnt have made it without him.But as much as family and friends try to understand it is to weird and ill logical for them to comprehend. Depression is a big part of this as well. I find myself not wanting to go anywhere or see people because of my pain. Its not just the pain its my reaction to it. I have had this for 7 years and just can not get used to the sudden flare ups of pain. I still shout out in pain and flinch and cry and pass out at times.I find that sometimes talking about it helps for the time being but it still doesnt relieve the tension.I try and joke about some of it. A good sense of humor is mandatory! Although it is very difficult to maintain much of the time. It is something to work on day by day and taking this day by day is the only way to survive it.RSD effects the immune system so above and beyond everything else I am susceptible to every cold and flu and get run down quite easy. This is such an odd disorder that many people cant see how one can be in so much pain. Only us who suffer seem to really understand this with the exception of the RSDSA. It is a research group for RSD. I have learned so much from this organization. Reflex Sympathetic Dystrophy Association, 116 Haddon Ave, Suite D, Haddonfield, NJ, 08033-2306, 856-795-8845..best of luck to you and all who have this dreaded disease. We all pray for a cure soon.