My name is Denise and I am forty-three years old. I was first diagnosed with diffuse scleroderma in February 2002, but my symptoms began subtly in the summer of 2000.
It started off with swollen hands and feet. My rings no longer fit and some of my shoes were tight. At first I wrote it off to water retention from premenstrual syndrome (PMS). Then in early fall I had bad carpal tunnel syndrome and ended up having surgery in December. The hand surgeon suggested I see a few specialists since swollen fingers were not a symptom of carpal tunnel, and certain Autoimmune Diseases can cause carpal tunnel syndrome.
That winter I developed Raynaud's in my hands and feet and went to see a rheumatologist. I saw her a few times and she kept saying that it was only Raynaud's and that ten percent of the population have it. But I was not convinced, since the skin on my fingers appeared different to me, and my fingers were still swollen. So I got a second opinion, and it did not take him long to suspect scleroderma. This doctor referred me to a rheumatologist who specialized in scleroderma.
I was lucky to get in to see him after a three month wait. After this rheumatologist thoroughly examined me, he put it all together and diagnosed me with diffuse systemic sclerosis.
It took almost two years to come to this diagnosis, and it probably would have taken longer if I had not educated myself about the disease and suspected something more than Raynaud's early on. If you feel there is something wrong and you know you are not a hypochondriac, then please take the initiative and do not give up until you are satisfied and have an answer.
This takes me to where I am today, and I am doing rather well so far. I still see my doctor every few months, and my lungs get checked out also. I was on a short course of methotrexate last year, and it seems to have stopped or at least slowed the progression of the disease. My doctor is confident that it is no longer life-threatening; and I do have faith in him since I feel he is one of the best. So I will try to believe that.
As of now, my Raynaud's seems to be worsening, so I do what I can to prevent getting an attack, such as carrying hand warmers in my coat pockets, or pocketbook. I do this even in the warm weather due to air-conditioning. Raynaud's is a pain in itself; but oh, how I wish that my first rheumatologist was right when she said that it was only Raynaud's!
I have the aches, pains, fatigue, depression, finger ulcers, swelling, and digestive problems that go along with the disease. Some days are worse than others. I try to take care of myself by exercising within my ability, which is one of the reasons I feel I am doing better than I would be. That is very important. I take vitamins, but I always have. I rest when needed when I can and try not to overdo it. I listen to my body.
I do not work anymore because the unpredictability of this disease makes it very hard for me to hold a job. Not working also because it enables me to take care of myself. I do not think I would be doing so well if I had the stress of holding a job and keeping a home and family. Truthfully, I wish I could work; but realistically I do not feel I can. I try to keep myself busy in between caring for myself and my family.
I am learning all I can about this disease. Thank goodness for the Internet! I am trying to keep contact with various support groups online, as well as with meetings when I can. Unfortunately, there are not any support groups in my area, but we are working on it. I feel it is important to know that there are many others like us and many much worse, who suffer with this relatively rare disease.
I do not know what the future holds, so I am just living my life the best that I can.
Email:Withheld by request
Story posted 6-23-03
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Carpal Tunnel Syndrome
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.
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.