I have rarely heard the term CREST and am interested to learn more from real people about this disease.
I am in my mid forties and was diagnosed with Raynaud's when I was about twenty-two. The doctor also said that I have fibromyalgia which in my experience is a wastebasket term for 'we do not really know what you have nor do we care.'
I have had ANA ranges from 1:80 to 1:320. My symptoms range from very painful hands when they are cold, to burning hot when they are warm. The bones are recently beginning to become quite painful at times. My skin seems to get tight over my knuckles and turns white when I grasp things or put my hand into a fist. I have esophageal spasms, motility problems, severe acid reflux with pyloric stenosis. As yet I have no real problems swallowing or chest pain even when I take my prescription medicine for reflux.
I have severe tinnitus in both ears and have had temporomandibular joint (TMJ) surgery on both sides of my face, which was mostly due to the impact of an auto airbag injury. I also have irritable bowel syndrome (IBS) and sciatica, as well as neck, back and hip pain. I have skin sensitivity to hot and cold, some fabrics and even touch at times. I frequently get itchy rashes on my arms legs, tummy, back, and hips as well as paresthesia ( a fuzzy numb feeling) on arms, hands and face.
Could this be CREST with an overlap of something else? I had a friend tell me she thought it sounds like lupus. My doctor does not seem to think so.
Most of the time I am tired and hurting. I am also tired of going to doctors. I was in a car accident two and a half years ago and have had four surgeries since then, three surgeries on my right hand as well as the bilateral TMJ surgery.
I feel as if I have used my life's ration of fuel and that I am existing on fumes. Thoughts anyone?
Email: [email protected]
(Email valid but email quota
exceeded as of 01-24-05)
Story posted 3-16-03
Email note posted 01-24-05 SLE
Story Artist: Ione Bridgman
Story Editor Saba Sadiq
Irritable Bowel Syndrome (IBS)
Temporomandibular Joint (TMJ)
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
Saba Sadiq is the ISN Story Editor for this story.
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of 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: