I was interested about some stories concerning this CREST diagnosis. I, too, began with feeling the cold, to the point that I nearly scalded my body in attempting to warm myself in hot showers. I was originally raised in a cold climate country town and previously had rarely felt the cold.
I began to notice that my fingers and toes would go completely white, devoid of blood, so that it looked like my fingers had died! I also began to wake often through the night with numb hands and feet. It caused me quite a lot of concern as the numbness seemed to move to my hips and upper arms. It did not seem to matter what position I laid in.
I have always had an irritable bowel and my allergies increased. I have had asthma for many years. Life seemed to be falling apart. So off I went to the doctor.
I was nervous about the blood tests. The doctor seemed to be concerned. She said it was CREST and sent me to a specialist. The specialist was a laid back, relaxed man who did not seem too concerned about my symptoms. He said I would be fine, just manage the symptoms.
I only had a vague type of understanding about my condition and it is sites like these that give you lots more to think about. Knowledge is gold to me! Having all this information about my condition is helpful but also a bit daunting. It is interesting to see that Australians have a lot more cases than other countries, and I wonder why that is?
Life for me is always wearing gloves, knowing where every available public toilet is, sleeping with endless pillows and continually assessing my breathing. Am I just fat and unfit or is it something more? Is the red rash on my face a CREST symptom or just another allergy to the 21st century? Is my irritable bowel CREST or just something I have always had?
Specialists and doctors do not seem to be much help and I wait months and a lot of expense for them to say they don't know, and ask me how I feel.
I manage my Raynaud's. I try and manage the other symptoms. I think about the future and wonder whether this will kill me. I live life the best way I can. It is difficult that this CREST is rare, as there is nobody to share my fears with! My family is supportive, but they don't really understand.
Is there a support group somewhere out in the ether? I don't mean to sound maudlin as I really am a happy person. I get on well with people but a support group would be nice.
Email: Withheld by request
Story edited 08-03-06 JTD
Story posted 08-23-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Types of Scleroderma
What is Scleroderma?
Worldwide Support Groups
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: