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Stefan: Progressive Systemic Sclerosis

Frankly, it is terrifying to have this diagnosis, but at the same time I at last know what is happening and that I am not imagining all these diffuse problems.

Blue Needlepoint for Stefan by Shelley EnszI am a sixty-four-year-old female recently diagnosed withprogressive systemic sclerosis (scleroderma). I have been moving towards this diagnosis beginning in 1987 with a heart failure resulting from cardiomyopathy

My infraction rate was 21. I did recover and have dealt with related asthma, and general fatigue. In 1991 I was diagnosed with systemic Sjögren's Syndrome which has caused many difficulties for me from severe joint pain, difficulty swallowing, mouth and eye sores, reflux and very slow motility in the lower esophagus requiring stretching surgically numerous times.

I have had ongoing pain in my hips, knees and hands which has been blamed on arthritis. In 1993 I developed tremor in both hands and a strange rigidity with involuntary muscle jerking when at rest. None of the doctor's could figure this out other than to call the tremor a familial problem which did not identify the muscle problems I was having.

Over time I have been in constant pain with medications going from Tylenol 3 until now at this time to prescribed Morphine 80 mg twice a day. At times I have been very depressed over the chronic pain and continuing body problems. In 1993 I was diagnosed with Raynaud's,and severe asthma which results in heart failure in crisis.

This last 2 years has seen my hands and fingers deteriorate as the fingers began to swell, the right hand at first and now in both. They swell and cause extreme pain and I am unable to make a fist because of the swelling and lack of circulation.

Finally when my local G.P. retired, his practice was taken over by a young and new doctor. Since my medical history is very thick he had to read the whole thing to get some idea of the problems. He diagnosed me from the medical file and gave me finally the diagnosis of scleroderma. Several specialists had mentioned scleroderma to me but had not diagnosed it. My new G.P. did It has been a long road to get to here.

Frankly it is terrifying to have this diagnosis but at the same time I at last know what is happening and that I am not imagining all these diffuse problems. I would like to hear from others who suffer with this disease. I am also interested to know if intense sweating with the least exercise is also shared by others. My lung problems are really becoming serious and I am now on an at home nebulizer.

To Contact the Author

New email address needed 07-19-06 SLE
Old Email Prefix: lmills
Story posted 1-24-02

Story Artist: Shelley Ensz
Difficulty Swallowing
Heart Failure
Lung Involvement
Progressive Systemic Sclerosis
Sjögren's Syndrome
Go to Stephanie: Morphea Scleroderma

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)