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

Yvonne Frasure: CREST and Fibromyalgia

I believe in miracles - and I am waiting for mine.

Charles and YvonneSo far I have been diagnosed with fibromyalgia and Raynaud's phenomenon. In addition, two doctors are leaning toward a diagnosis of scleroderma, but I am not sure which type. One doctor believes I am developing CREST Syndrome.

I went for about two months throwing up everything I ate and although I would not feel like eating for a few days, I did not lose weight. I have a lot of pain throughout my muscles and around the joints for a few days at a time. My ANA is 1:1280.

Off and on, I either wheeze or have a burning sensation in the bottom of my lungs. If I exercise really hard, I have a bloody taste for about an hour afterward. I have lapses of extreme exhaustion; I can fall asleep while typing. Then I can go for a long period and be fine. I feel like I am just imagining the bad days.

I am having trouble dealing with this because I have always been strong, with good endurance and able to concentrate. Now I feel like a whining hypochondriac. I am on three stomach medications and a calcium channel blocker.

~ Update April 2002 ~

As everyone does, I went from doctor to doctor, and I was seeing an internist up until last fall. She had sent for my blood tests from the rheumatologist and some information was missing. We did not retest and based on the information she had, along with my symptoms, I was diagnosed with CREST syndrome and fibromyalgia.

I am not sure about the progression of CREST. I have had this disease for at least four years, probably longer when I think back over the years at the symptoms I've had. Anyway, I no longer go to the doctor because I simply cannot afford it. I cannot get insurance so everything is out-of-pocket, which can get very expensive.

I am a senior in college at the ripe old age of thirty-four and still have a couple of years to go. Sometimes I wonder if I will make it. I plan to teach eventually.

My daily routine is to ignore whatever I feel and take care of my family. Sometimes it seems to be more of a chore than I can bear. My hands stay red and swollen, except when the Raynaud's phenomenon is running rampant with its red, white, and blue. I have episodes of pain that occur with spontaneous bruising. I am not at all clear what that is. The fibromyalgia never completely lets up. The pain is constant: twenty-four/seven. My hands and feet are shiny and stiff.

I have esophageal dysfunction,telangiectasia, Raynaud's phenomenon, and apparently, sclerodactyly. These are four out of the five criteria for CREST. I have to admit, over the past few months, I have done considerably better (at least up until the past two weeks). Only time will tell. I believe in miracles - and I am waiting for mine.

To Contact the Author

YvonneFrasure
Email: [email protected]
Story update posted 4-20-02
Story edited VH1: JTD 9-9-03

ISN Senior Artist: Sherrill Knaggs
Story Editor V1: Judith Devlin
LINKS
CREST Syndrome
Esophageal Dysfunction
Fibromyalgia
Raynaud's
Sclerodactyly
Telangiectasia
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 Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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 Yuri: CREST Syndrome
 
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including memorials for
Jim Miller, Frances Maude Baldwin Watson and Rubye Mai Blocker Westmoreland.
Thanks to Winn Schillberg for donating to scleroderma research.
Donate or Shop Now
 

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 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. Privacy Policy.
 

The most important thing in the world to know about scleroderma is sclero.org!

Donate Now
Copyright 1998-2017, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.