I had not been feeling well over the course of the past two years. I had been told years ago that I had fibromyalgia. I often questioned that and thought that there was always something more to my pain. I started with a new rheumatologist in August 2008 and was given the diagnosis of scleroderma today.
I cannot believe all of the things that are happening to me. It started out with puffy fingers and hands. Then the Raynaud's kicked in and now the tight skin has developed. I am experiencing this in many parts of the body and the systems have progressed very fast. I cannot believe the difference in the way my face feels. It also has looked puffy and now is getting tightness and hard places.
The latest frustration came when I could not get my hand to work with the utensils while I was cooking. I could not stir the food or use the fork to taste the food. This was really a wake up call for me. I am starting to really see the effects of the disease.
I don't know how I feel right now. Numb, scared, anxious and mad are to name a few. It doesn't help that I don't get much sleep. My doctor started me on something called protonix for my severe acid reflux and that has been a big help to my stomach. He also has given me darvocet for the pain and started me on plaquenil. I was one who never liked to take much medicine but now I have no choice. He also told me that this disease will probably get much worse and that he will adjust the medications as my body changes. I see him once a month now. I have heard so many horror stories about doctors but I really have been lucky with this one.
I know this may sound crazy but the diagnosis scares me but I was just happy to have the diagnosis so that I knew what was happening and what could happen.
Thanks for all of you who post updates because I have received a great deal of info from them already.
Email: [email protected]
Story edited 02-25-09 JTD
Story posted 03-13-09 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Difficult Diagnosis Stories
Heartburn (Reflux) Stories
Limited Scleroderma Stories
Sclerodactyly (Puffy Fingers)
Sleep Disorders and Scleroderma
Sleep Disorders Stories
Skin Fibrosis Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: