About five years ago I was diagnosed. Nobody so far has been able to explain to me what to expect. My doctor tells me to keep on going with the prescribed treatment, but when I ask, "Until when?" all he can say is that he doesn't know.
I take nifedipine morning and night, but when I come back from work and feel really cold, I also take it with dinner. My doctor tells me to regulate the treatment according to how cold I feel. Fortunately I am going through menopause and I am having hot flashes. But in between hot flashes I feel like I'll die from the cold.
I am a general employee, and I have to work with a parka and gloves. At night I wear two pairs of pajamas, a hot water bag, a thick down comforter and another one made of wool. I only feel better when I run.
On Sundays I go running or jogging. I am cold when I start, but after twenty minutes, I feel better. When I arrive from running, sometimes 42 km marathons, I can finally wear short sleeves or spaghetti straps. Must I run all my life? I am beginning to feel tired, and I don't feel like running anymore. Will I be forced to move, run and jump forever? I can barely sleep at night, and I always have cold feet and hands. I cannot do chores around the house, since even lifting a pot tires me out.
Is there something that could really cure me?
Story edited 12-15-08 JTD
Story posted 01-16-09 SLE
Story Artist: Ione Bridgman
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
(Italiano) Alda: Sindrome di Raynaud
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
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 .
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
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: