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.
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
PDF Brochure: What is Scleroderma?
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
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: