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Re: I have had full body RSD for 5 years

Re: I have had full body RSD for 5 years

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Posted by Tammy on January 15, 2000 at 22:54:34:

In Reply to: I have had full body RSD for 5 years posted by Rebecca on November 09, 1999 at 13:27:00:

: I am a 31 year old mother of a 7 year old daughter. For most of her life I have had RSD which started after a spine surgery because of a careless driver who hit my car head on. How do you even begin to talk about this monster who is called RSD. For 2 years and 12 surgeries later due to malfunctions of different parts of my body some Dr. finally recognized I had RSD. But then the bad news came when he said we could have cured you if only it had been diagnosed within 6 months. Unfortunately by that time RSD had spread throughout my entire body. The only thing my Dr. did no was that there was nothing I could do and it was a rare thing to have happen (he didn't even know it was a disease). All these symptoms I was having he didn't know the origin of most of them. I lived in the dark until a year and a half ago when I got a computer and had access to all these sites regarding this thing that had been torturing my body and mind for almost 5 years. Every symptom I had was right there! I have lost 15% of my bone density which also has involved my teeth and gums, blisters on my skin, horrific burning pain, illnesses that don't heal, sleep which is one of the hardest things to get,sweating all day so that I have to change 4 or five times a day and dry my hair just as much, but while I am sweating my hands and feet are like ice cubes(how are you supposed to warm one thing and not the other?). My daughter crys and says that if I die she wouldn't want to live without me and OHHH my God I want to be here loving her and my husband but I get so scared because this disease just keeps getting worse. I wish that there was more outlets to inform the people and Dr.'s what kind of monster this disease is and more funding to find a cure. If anyone out there can or knows of anyone who could help me find a way to enlighten as many people as we can. I don't want to have anyone else get this disease and it's mostly curable within 6 months of onset. If someone had only known when I was in the position. Please if anyone wants to talk about anything I am here and I will help all that I can. I will say prayers for all of us who are in for the fight or our lives. We have to fight and we have to win! It is the only way that we can have hope! God bless all of you and your family's. Keep the love in your heart..Rebecca.

: : Oh, rebecca, what a heart warming letter you wrote...I try not to let my RSD get to me... and it would KILL me to hurt my kids with the knowledge of my pain...I had surgery on my knee and several follow-ups, in which I was told that they had fixed the problem, and everything else was "all in my head". I was so frustrated, that the last Dr. who told me that, I threatened to throw out of the room, if he came back in, and left my knee brace and my crutches with the receptionist, telling her she could tell him to shove it up...well, you can guess where...I finally found a doctor who ran a few simple tests and came to the conclusion that I had RSD...I was so happy to know it wasn't all in my head, but, every time I have been back, and found that it has spread to another part of my body, I go into a very long depression...I know what it is, and how to deal with it, but, I am terrified that someday it will be full blown, throughout my body...unfortunately, this a disease that most doctors know little about, and don't diagnose until it's too late!!! I thank God, everyday, that I just happen to find a doctor (actually he is a CPA) who was up to date, and informed, and diagnosed me early enough, but the pain is still intense and very real, and I would love to be able to talk to anybody else who has suffered from this disease...for the longest time, I thought it WAS all in my head, but in reading some of these letters, I can relate, SO MUCH, with what everyone else is going through, that I KNOW that I'm not just a "head case"....I know it's stupid to show my address...but I really feel blessed that I have found people with a common struggle, that I would really like to hear from you @ [email protected]

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