I am newly diagnosed with CREST and obviously scared to death. I have had years and years of musculoskeletal issues which always seem to resolve on their own, only causing me to treat with over the counter medicines most of the time.
Recently I had a painful joint in my left foot that I saw the podiatrist and my general practioner (GP) for, but it didn't resolve in the usual way. Instead I ended up in the rheumatologist's office and after extensive lab work was told I have anti-centromere antibodies.
The bizarre thing is that my foot is much improved and I have none of the other symptoms that are associated with the syndrome. Thankfully no Raynaud's, or skin changes. I have had irritable bowel syndrome since my twenties which has always come and gone without notice.
I will be seeing a gastroenterologist in the next couple of weeks for upper and lower endoscopy but I feel confident that I don't have esophageal issues, either.
I am forty-seven years old, married and have two daughters, ages twenty-five and seventeen. And quite frankly, I don't have time to be sick and look forward to being an active grandmother some day and not wanting to rush my life away!
This condition seems to be all over the board with how it presents and how quickly it affects each of its victims. I keep looking at myself for irregularities and freaking out my husband who tries to tell me to quit looking for something that's not there. I am just very afraid and feel like I am a time bomb. I really feel good except for some typical stiffness that I had long before the diagnosis.
I am also a Registered Nurse and know all too well how much one's mind can affect healing and wellness but I find myself stressed more than usual about this thing.
For the time being I am planning on keeping my wits about me for as much as I can and do all the things I know about being a "well" person; relax, eat well, and exercise. Thankfully I am a person of faith and I believe god will guide me through it.
Email: [email protected]
Story edited 01-04-10 JTD
Story posted 04-09-10 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
CREST Syndrome Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
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: