SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) 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

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Heather A: Scleroderma

South Africa

Red and White Flowers by Shelley EnszI am a fifty-year-old woman. A year and a half ago I was diagnosed with scleroderma which I had never heard of.

I was off work pending a Medical Board after having two major neck operations. The scleroderma started in my feet and hands. I went to my doctor and he gave me injections of cortisone which helped for about three weeks and then the symptoms came back.

I must say that I was a very fit woman, walking about five kilometers every day, then suddenly I started having muscle pain in my thighs and a burning sensation running up into my buttocks when I walked. My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen.

Time and time again I went to my doctor, he was baffled by my symptoms and sent me to a neurologist. He diagnosed me with rheumatoid arthritis. By then my skin all over my body was getting tight and he then sent me to a rheumatologist who straight away diagnosed me with the scleroderma.

I had to go straight to hospital where tests were done to see if there was any damage to my insides, which luckily were okay except for my esophagus which had narrowed making eating and swallowing difficult. I am on a lot of medication for muscle pain, nerve pain and just about everything else.

As time went on I could hardly walk on my feet as the toes were also curling up. I had two surgeries on my left foot and one on my right foot about three months ago. The surgical cut on my left foot still won't heal. Now I am having pain in both hips. I have had a cortisone injection in my left hip which seemed to help some. Now I must go for the right hip. My arms and sides are so tight and hard (full of bumps) and my knuckles always have sores on them that just won't heal.

I am at the moment totally housebound. I am on antidepressants as the depression gets so bad that I cannot stop crying some days. The pain is so unbearable on some days that I want to curl up and die. I suffer from heartburn and the worst is that I cannot go for my walks anymore or do any sort of exercise.

I just hope there is hope out there, somewhere.

To Contact the Author

Heather A.
Email: [email protected]
Story edited 07-01-2010 JTD
Story posted 07-08-2010 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Depression
Depression Stories
Difficult Diagnosis
Difficult Diagnosis Stories
Heartburn (Reflux)
Heartburn (Reflux) Stories
Skeletal Involvement
Skeletal Involvement Stories
Skin Fibrosis
Skin Fibrosis Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

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 Heb: Scleroderma
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. 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:

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

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.