I have had trouble my whole life with "fibrous growths" in and on my organs (first kidney surgery at age 6 ) - multiple surgeries to repair "scar tissue" and "adhesions", hysterectomy and repair surgeries (early 20's) because of "fibrous growth bands" from 1963 to 1985 - lots of skin issues.
I was told about 20 years ago (age 44) "Oh, you are just cold because you have Raynaud's-no big deal" - and I thought OK. I started getting weird red bumps on my face that would not go away, had trouble with my jaw and hands, cold and burning feet and toes, etc., etc., but I never got thick skin. I got TMJ, gout, weird rashes and arthritis .
My sister was diagnosed with CREST about 15 years ago, and she is really suffering from lung issues.
Since around 2008, I started having a lot of lower abdominal pain, then both upper and lower, since 2015 I have had 3 hernia repairs (inguinal, ventral and femoral), diagnosed with large hiatus hernia, inflamed stomach, bleeding stomach, had pancreatitis and my gallbladder removed, got diverticulosis and then some weird inflammation of my colon, heavy feeling in my chest, hard to take a deep breath, some coughing for no reason, all the while suspicious it was CREST.
I am officially diagnosed with scleroderma a la Raynaud's, and have some of the other required conditions already (the REST part of it) but no Dr around me area knows what to do.
I have lost 30 pounds since 2015 and continue to have some really bad and painful GI troubles - I live in a small town and finally got a doctor to even consider sine scleroderma, (only because the Raynaud's is so bad now I am cold all the time and the red spots are worse and now my hands and feet are actively turning colors and burning and I weigh 80 pounds) and now they want more invasive testing (scope tests). I am scared knowing this dang condition has dogged me a million years - I may be at the end of the line and no one is able to tell me what is actually happening and what I have to look forward to in the immediate future.
I sure would like to have some useful information from other folks with sine scleroderma; unfortunately, my sister is not able to or doesn't want to communicate with me about this.
Thanks for reading this and for any advice, and thanks to this forum.