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Originally Posted by Franny
Hi everyone. I was diagnosed with "it" 14 months ago but I am one of the fortunate ones . I started Nerve blocks right away and other than, burning, aching, stabbing pain and a little muscle waist, (oops it`s in my right arm from shoulder down,) I am still able to flip the "bird" to bad drivers! The pain does get pretty severe alot but looking at me, other than the goofy look I have on my face, you wouldn`t know I have it! I hide it pretty well but I can. I hope I made some of you laugh a little because this disease brings so much sadness to so many people! My love and support goes out to all of you and I hope if you want to talk I am here. I will need to talk to you guys too. It is just great to be able to "talk" to people who "know". Believe me I have had my times and have lots of fear but I try to keep some humor in life because some days it may be the ONLY thing that gets you through! I won1`t go into the long story of how I got it just now but I just wanted to say hi everyone. I hope sometimes I can make you smile.
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Hi Franny and Welcome. My name is Loretta and I have had this 12 years following surgery. A sense of humor and gratitude is sooooo important to help us get thru this. The pain surely gives us enough negativity. I have both the burning and discoloration and also the cold clamly sweating. I used to have the daily shooting pain, spasms, uncontrolable jerking until I found the right Dr. and balanced my body with meds, anti-seizure med. It makes you tired and gain weight, but I was in constant jerking and electric jolts going thru my body and brain while sleeping and lifting my head off the pillow. I had to go up to 3200 mg of Neurotin for them to quit, and now I switched to the new drug Lyrica. It helps more with the pain. anti-depressants also work well with nerve pain. I also take an anti-anxiety med, because stress increases the symptons so much.I personally would rather take these meds and keep the opiates miminized. I take Vicodin. Hope we can be there for you too. In the city where I live, there is a monthly support meeting. You can go on line to national rsd orginization and put in your zip code and they can give you the closes one and a phone number to call. They have interesting speakers and talking to others who really understand is such a good thing. Hope today is a good day for you. Loretta