[Skip to Content]
Patient & Caregiver Stories Main Menu
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
Stories in Other Languages: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

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

Judith Rose ThompsonJudith 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!

New Personal Stories

Kristi U: Systemic Scleroderma We sold our motel business because it hurt me so bad to work each and every day...
Chris D: Systemic Scleroderma About eighteen months ago my entire body began going haywire...
Iko H: Limited Systemic Sclerosis (Belgium) I am fifty-one years old and in May 2011 my diagnosis of scleroderma was confirmed. I am studying for horse veterinarian and am in my last year...
More New Stories
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
Go to A.M. Keyes: Surviving Daughter
About the ISN

This website is certified by Health On the Net Foundation. Click to verify.We are a full-service nonprofit 501(c)(3) providing stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. This site complies with the HONcode standard for trustworthy health information: verify here.


Scleroderma Hotline (English Only)
Toll Free U.S. Call 1-800-564-7099
Direct Line: Call U.S. 952-831-3091

Post a message in Sclero Forums
Email: isn@sclero.org

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States

AKA Scleroderma from A to Z and SCLERO.ORG
Privacy Policy, Financial Disclosure, and Disclaimer.

Home   Medical   News   Sclero Forums   Support   Translations

© Copyright 1998-2014 International Scleroderma Network
All Rights Reserved