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I Can Name The Moment The Sd Began In My Body ...

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#1 danceswithcats


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Posted 29 December 2007 - 11:12 AM

I've had Mixed Connective Tissue Disease for probably 15 years now. I went thru 6 years of Systemic Lupus ... not fun. The SLE had gone quiet for a month or more and seemed to be backing off. I was laying down for the night in the early evening with my husband beside me. Suddenly I felt as if my stomach were blowing bubbles all the way up my esophagus! I said as much to my husband and said 'this is so weird'! There was no belching. There was no gas. But I felt my stomach and my esophagus undulating with contractions .. so odd. I now know that it was the muscles shutting down because of the SD. It was the last time I was able to lay flat with a pillow like a normal person. Now I lay on a foam wedge and 4 pillows and nearly sitting up. It was the last day I was able to eat normally or had a normal appetite. I had been on some pretty heavy doses of Prednisone and had the weight and the moon face because of it. In the next 2 months, I lost 85 pounds. (not such a bad thing!)

Has anyone else experienced anything similar?

Shortly after, Dr. Wigley at the Johns Hopkins SD Clinic diagnosed the SD. That was in 1998.

#2 Clementine


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Posted 29 December 2007 - 03:22 PM

How is your digestive system currently? I also have
the very odd stomach noises. My stomach makes
crazy noises when it's full, empty, semi-full, whatever. You can hear it from across the room and my dogs actually look at me and want to bark.
I told the GI Dr. and he told me it was from holding in
burps. He told me that often, women in particular, were
conditioned to not belch. I am serious. I actually do hold in
belches (most of the time) but I find it hard to believe
that this is the reason for my VERY ODD gurgling and churning.
Has anyone ever heard this?
My rheumatologist said it was weakening of the diaphragm.
I hope you are doing OK...sounds as though you have a lot
going on.
Happy New Year!!!

#3 danceswithcats


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Posted 04 January 2008 - 08:54 AM

Hello Tangelo!

I don't have the tummy noises but then I learned very early on with this disease that I could no longer be a lady! I let the belches out or else I suffer terribly with pain. I just say excuse me a lot. It's just all part and parcel of SD.

Weakening of the diaphragm is an odd diagnosis I'd never heard of before. Before this stupid disease I sang (opera in college and musicals ... can't manage it now!) but the diaphragm is good and strong.

Hope you're doing well! Happy New Year!