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Amber: Morphea with Possible Systemic Sclerosis

I was convinced he was no expert on the matter and sought out another doctor as the morphea continued to spread.

Flowers for Amber by Shelley Ensz My story with morphea started two years ago. I went to a tanning salon in February of 2000 and got horribly burned on my thighs and buttocks. It was so bad that it looked as if I had been caned. I figured it was just a burn and would go away. The skin on the back of my left upper thigh never got better, and it looked like a bruise. I paid no attention to it until November when it began to spread down my thigh.

I went to the dermatologist and he quickly diagnosed it as morphea. He told me it was related to scleroderma and would go away on its own without any intervention. Unfortunately, I watch Lifetime frequently so I knew about systemic scleroderma, and I was shocked and scared. He reassured me that although it is related, it would never turn systemic. After a couple more visits with him, I was convinced he was no expert on the matter and sought out another doctor as the morphea continued to spread.

The doctor I now see has treated hundreds of patients with morphea and has claimed to see some patients' morphea turn systemic. This scares me to death because recently I have noticed several odd things going on.

In early February 2002, I began to have sharp, shooting pains that originate in my lower back and go down into my legs. My lower back was horribly sore, and it was difficult to sleep at night. In addition to the shooting pain, my muscles were sore in the back and sides of my legs.

About two weeks later, I noticed a tremendous and visible decrease in the amount of cellulite on the backs of my thighs, despite no change in my eating or exercise habits. I attributed this to skin thickening. I also noticed a burning sensation in the backs of my legs.

To date, the back of my right leg is still sore. The skin on my upper arms is not horribly sore, just a little sore to the touch. I have also begun to have pains in my ankles and forearms that seem to be in the bone. My legs, fingers, and feet often itch. And I am terribly tired all the time.

I called my dermatologist today to inform him of these changes. He wants me to come in next Monday and is very concerned.

I wonder if I am the only person with morphea experiencing these other things. I also wonder if anyone with progressive systemic sclerosis started out with a diagnosis of morphea.

Please contact me if any of this sounds familiar.

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: genrex2000
Story posted 3-11-02
Story edited VH1: JTD 9-5-03

Story Artist: Shelley Ensz
Story Editor: Sherry Jo Young
Story Editor V1: Judith Devlin
Burning Sensation
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Sherry Jo Young

Sherry Jo Young was the ISN Story Editor for this story.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to A.M. Keyes: Surviving Daughter

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)