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

Tracie S.: CREST with Fibromyalgia

After reading about CREST I do not think that just an antacid will do it.

Sunset Rose for Tracie by Sherrill Knaggs, ISN Artist Eleven years ago I was in a car accident that resulted in a severe whiplash. I recovered from this but started to feel really bad over the next few months. After suffering for three years, I was diagnosed with fibromyalgia.

I ache from head to toe, am cold all the time, feel like I am in a fog, in general just am not up to par. I also have really high blood pressure. I am on three different blood pressure medications, but my pressure is still 180/110. My regular doctor never seems too concerned about this. I also take medications for muscle spasm and for chronic pain.

Not related to the fibromyalgia, I also started having a choking problem. My doctor actually laughed and said, "Gee don't you think you are over reacting a bit? You can't be choking as bad as you claim. Look at you, you're not losing any weight." Actually I had lost seventy-nine pounds over the last three years, which goes to show you how much he paid attention.

So I had my throat stretched twice, but after the last one, I am still having choking issues. My gastroenterologist (GI) doctor had me take a motility study so that I could have surgery to fix a hiatal hernia that they thought was giving me my problems. This seemed like it was going to be a quick hospital stay, just two days and no more heartburn.

The day of the surgery I got a call from my regular primary care doctor who informed me that my surgery was cancelled. I was kind of ticked off about it because I really did not understand why they would decide suddenly not to do it.

I went to see the surgeon that day and she said, "Well we can fix the hernia, but you have scleroderma." I said, "Okay, what is that?" She said, "You don't know?" She then told me that I have no L.E.S. and only ten percent of my esophagus is functioning.

I went to see a rheumatologist and he said that all my blood tests were fine, but that my I have all five of the signs of CREST. He prescribed something for heartburn and said, "There, that should fix the problem." After reading about CREST, I do not think that just an antacid will do it.

Now after everything else that has happened in the last three months, I have had to change my primary care doctor, because after treating me for ten plus years he suddenly decides that I do not have a reason for all the pain I am in and he will no longer give me pain medication. I am quite perplexed by this.. he told me that other people with scleroderma don't have the pain that I do, so he thinks I need physical therapy instead. I said, "So because I have scleroderma, my fibromyalgia pain isn't real?" He just shook his head and said he believed that I just thought that I was having pain.

I have tried therapy (both mental and physical), anti-seizure medications, and anti-depressants as well. Nothing works except duragesic patches or heavy doses of oral pain killers, and that is just for a little while.

I still hold down two jobs, but I do not know how much longer I can hang on. I am about to lose my medical coverage because my divorce is almost final. It hurts to walk, it hurts to breathe. Sleeping is a chore as well. I would love to give up one of my jobs, but I am raising a sixteen-year-old and I have to pay bills and afford medications.

Maybe if I could slow down long enough I could look into disability, but I am really afraid to slow down for that long. I understand what "no cure" means and I am trying to outrun it.

To Contact the Author

Tracie
New email address needed 08-01-06 SLE
Old Email Prefix: wtrac
Story edited 04-30-05
Story posted 05-04-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
CREST Scleroderma
Esophageal Involvement
Fibromyalgia
Heartburn
Scleroderma

PDF Brochure: What is Scleroderma?

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 Tracy: Undiagnosed
 
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.