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I'm new and scared

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21 replies to this topic

#21 piperpetpete


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Posted 06 January 2010 - 05:21 AM

Interestingly enough, I too have the pins/needles, tingling, burning and muscle twitching; I don't have any skin tightness as of yet but got down to 5 mgs. prednisone daily last month and my whole body started burning, kind of like inside out.

I am going to UAB in Birmingham later this month. As I was telling the rheumatologist yesterday, if you took away the pain, I'd feel okay. She wants me to try the Lyrica until my appointment at the sclero clinic. Do any of you have the jerky, muscle twitching, burning pain?

#22 Peggy


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Posted 06 January 2010 - 03:11 PM

Annie I'm so glad they are getting you into some treatments. I so hope they work for you. I have found that there is a pain management clinic in our town so after my quarterly appointment with my rheumatologist next week I'll see what he has to say. So sorry to hear that your disease is progressing so fast but good for you for staying on top of it.

From what I've seen with this disease every single person is affected differently but yet there are such similarities. For instance, I've had such terrible pain in the bottom of my feet and my heels and now I find out that this is from the sclero wearing away the cushion in the bottom of the feet. There are so many things this dang disease seems to affect.

I'm anxious to see how my quarterly appoinyment goes. I have had some terrible reflux attacks again and to have that stir up again isn't comforting. What happens is I wake up in the middle of the night feeling like I'm being burned alive from the inside/out. So I take what they call a GI cocktail that numbs the esophagus and throat and keeps the acid down. Lately I've had to take 4 to 5 of these cocktails before the burning quits and then I throw up from the cocktails as they are terrible. So I guess it's time to see the gastroentorologist again as the sclero must really be hitting my esophagus again.

I'm glad you are getting used to navigating the site. I look forward to hearing more from you on how you are doing. I so hope you are getting the help and relief you need.

Warm hugs,