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Garc121

Entire torso expanded, thick, tight, hard, huge!

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By definition, I expect to have read a lot about thickened, hardened, blotchy skin. But my biopsy indicated the bottom of a tissue layer expanding and thinning the upper layers to compress into that hard thickness. But expand is an understatement! My skin is so tight around my midsection and ribcage. I haven’t gained any weight, but it easily looks and feels like an additional 30-35 pounds and gets more uncomfortable throughout the day as I add food and liquids. And the appearance isn’t the yellow/white looking patches. I have patches that are shiny, minor itching, red splotches, etc., but my concern is that I feel like I am a balloon about to burst. Bowel irregularity doesn’t help!  Is this familiar to anyone and do you know what the treatment is?

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Hi Garc,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with such very unpleasant symptoms and are having a hard time trying to obtain effective treatment for it. Please note I have no medical knowledge (apart from an out of date first aid certificate) and I'm afraid that I can't really hazard a guess as to the cause or nature of your skin problem. Morphea scleroderma does have several different types which include skin tightening (although I must admit that I've never come across the symptoms you describe) and I've included a link to our medical page, to give you some information.

 

However, with such a complicated scenario as you describe, the best person to advise you about your condition is your doctor/dermatologist. Did they discuss the results of your biopsy with you? There are over 3,000 skin diseases, and some of them share similar symptoms with scleroderma; I've included a link to our Skin Disease Directory, which I hope you'll find helpful and informative.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you for the kind welcome to the forum. If I weren’t so “swollen” I certainly wouldn’t be too uncomfortable and it probably wouldn’t be as difficult for a professional to evaluate and treat.

 

My rheumatologist has referred me to two scleroderma centers, one in Boston and one in Connecticut. My dermatologist referred me to a dermatologist who specializes in connective tissue and skin disorders. I will go wherever gives me an appointment the soonest, but I’ve already been forewarned that these things don’t happen overnight! 

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Hi Garc,

 

I'm very pleased to hear that you have had referrals to two scleroderma centres; hopefully you won't have to wait too long for an appointment.

 

Please do keep posting and let us know how you get on.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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My stomach at times looks like I am about 7 months  pregnant; the doctor did a x-ray and it showed a  lot of gas, so then I got to drink 2 bottles of barium when I got to the hospital to do the CAT scan. I had to go to the bathroom and if I did not get there soon I was going to lose it; I was so plugged up that they had to call a plumber to flush the toilet!

 

The problem was I had a bowel blocked and the barium somehow got the block to let loose. I am happy I did not have to have surgery.  I now take a stool softener twice a day and if I need to I can take a extra one. Scleroderma is a crazy disease; it effects each of us differently. Oh, I lost 5 pounds that day. :wink:

 

I send you my blessing.

 

 

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I too had really bad constipation and bloating.  I thought it was related to my scleroderma, bur it turned out to be the effects of certain drugs I had been prescribed.  When I stopped taking them, my whole digestive system quickly returned to normal.

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Hi Garc,

 

Welcome to Sclero Forums.  I may be wrong, I often am, but it sounds like you may be experiencing some bloating.  A place to start might be with your primary care doctor, who could assess for the most common causes and perhaps refer you to a gastroenterologist, if necessary.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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