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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 February 28, 2000 at 14:31:59:

In Reply to: Re: I have had full body RSD for 5 years posted by Richard on February 28, 2000 at 00:28:16:

: :Rebecca
: I see that you posted months ago, so maybe you wont see this reply. Dont torment yourself with thinking that there is any magical six month time limit for a cure. My wife broke both ankles seven months ago, and she had the burning pain and even a breath of air over her lower legs and ankles caused extreme pain right away. From three to six months she has had six nerve blocks. From my observations she got RSD from the moment of the accident and there was nothing that could prevent it, just get some temporary relief. This is a hell.

:
: 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.

: Rebecca, I, along with others from this board, have been keeping in contact, to talk about different methods we've tried, and tests, and such. I am also a mom, with three kids (14,13,&7) and had my first bout of rsd in my leg, and was detected quick enough to get it under control enough to lessen the pain, and have fewer and less painful flares, but have had problems with my arm for a year and a half, and finally gave up and went to my drs about 3 or 4 months ago, and he said it's in my arm now. by the time I decided I HAD to take time off from work, and get SOMETHING done, and got tests and appts schedualed, i started having problems in both lower legs, my full left arm, and my elbow, in my right arm. I am now, in constant pain, have the hot/cold deal going on, although I only notice my feet and right hand sweating alot. I don't have it to the degree that you and some of the others do, but i'm concerned, cause it is spreading so fast, over the past month. I go to the pain clinic in the middle of
march, and am praying that something will ease this. I have become a totally different person since this started again...and I don't like it at all!!!! I am willing to talk to anyone who needs to chat, you can email me at tweety@mvip.net. Take care of yourself, and I will be keeping you in my prayers. Tammy


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