It has been thirty-two years living with this and it has progressively gotten much worse and has spread. This is something that wasn't supposed to happen. Supposedly, if it starts when you are young it is supposed to disappear when one gets older but this is incorrect.
I now have considerable pain, it hurts to be hugged. Sleeping is getting almost impossible to do unless I use some sleep agents.
My throat is troughed out from the acid reflux, my right vocal cord is now paralyzed. I have a hiatal hernia in my stomach. And now my intestines are being affected, they have a very hot burning feeling and my skin on my abdomen now has morphea on it.
I have great difficulty swallowing, soft food is preferred. I did a swallow test to prove the difficulty which also showed my paralyzed vocal cord. I did an upper and lower GI colonoscopy to verify my hernia in my stomach and my issues in my colon.
I am taking more pain medication for the pain from the skin on my back and the hot burning pain in my abdomen.
There has to be a cure out there. I can't believe this is the way I am to live out the rest of my life. I have been told that because it is in my intestines that now my organs are in jeopardy.
My last doctor told me that the difficulty is only going to get worse, how fast he does not know.
Does any body else have this extreme pain, sensitivity to touch?
Email: [email protected]
Story edited 10-10-08 JTD
Story posted 10-13-08 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
Many thanks to our recent donors, Jack and Elizabeth Lewis, Network for Good, Shirley Miller, Reata Pharmaceuticals, and United Way of Snohomish County! See ISN News for more donors. Click Here to Donate.
TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: