I am a forty-nine-year-old woman recently diagnosed with early scleroderma. Although my problems with joint pain have been long-standing (approximately one and a half years), confirmation of my disease was made based on a positive scleroderma antibody found in my blood following testing for symptoms of Raynaud's Phenomenon.
Since the onset of Raynaud's phenomenon in the fall of 2000, I have developed many symptoms associated with this disorder: swelling of the hands, long-standing pain in both shoulders (first thought to be a rotator cuff injury for which I am currently slated for arthroscopic surgery), bilateral knee and wrist pain, telangiectases, thickening of the skin on the hands, general muscle aches, weight loss, and fatigue.
I am fortunate that my general practitioner (GP) was familiar enough with my symptoms to draw the appropriate blood work, which ultimately led to my diagnosis by the rheumatologist to whom I was subsequently referred. Until further testing is completed, I am uncertain whether my disease is limited scleroderma or diffuse scleroderma.
As mentioned previously, I am currently awaiting surgery for what was thought to be a right rotator cuff injury. I now understand from my rheumatologist that this constant shoulder pain may, in fact, be a symptom of my disease. This, of course, raises the question whether surgery is still an option? Or do I forego such intervention, as it will not likely be of help?
It has been one year since my diagnosis was confirmed as diffuse scleroderma. The year can best be described as a rollercoaster ride of emotional uncertainty. However, during the course of that year, I have made a remarkable turnaround, both symptomatically and emotionally.
Gone are the general muscle aches and pains, weight loss, and debilitating fatigue. I have regained eight of the almost eighteen pounds I had lost. No doubt my medications have had a significant impact, but I know with complete certainty that the incredible emotional support of family and friends has been paramount in this improvement.
Last March, I underwent the arthroscopic surgery of my left shoulder following lengthy discussion with both my rheumatologist and orthopedic surgeon. This surgery successfully corrected a rotator cuff injury totally unrelated to my scleroderma.
I am now once more walking two to three miles a day and only miss a few miles during our coldest prairie winter days. Although my recent pulmonary function tests (PFTs) last month noted a slight deterioration in my lung capacity since last year's study, I am awaiting a CT scan to rule out alveolitis or pulmonary fibrosis.
I know stress can have debilitating effects on patients with autoimmune diseases. During this past year, I have dealt with my diagnosis of scleroderma, the death of a family member to cancer, life changes associated with the retirement of my husband, and the marriage of our only daughter.
I truly believe that without a strong optimistic outlook and an I-cannot-let-this-defeat- me attitude, the improvement in my health would not have been possible. I know the road ahead is uncertain, but I plan to take each day, one at a time.
New email address needed
Old Email Prefix: kctt4
Story posted 2-7-01
Story updated 2-1-02
Story edited 7-28-03 JTD/V1
Email note posted 01-21-05 SLE
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Types of Scleroderma
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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.