(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

Joan Elston: Systemic Scleroderma, Sjögren's, and Fibromyalgia

Despite all, I try to remain positive.

I am sixty-one years of age and live with my husband Bryan in Durban, South Africa.

My health problems go a long way back. Almost twelve years ago, in 1988, I experienced an influenza that I just could not shake off for over a year. I was eventually admitted to hospital and when blood tests did not show up anything sinister, I was diagnosed as having the ME Syndrome or CFIDS as it is also known. I became severely ill and for at least a year I needed the use of a wheelchair.

Two and a half years ago I attended an ME support group meeting where the Celiac condition or gluten intolerance was being discussed, and decided to put myself to a test for the condition.

I soon realized that I was definitely made worse with gluten products and immediately ceased having anything containing flour, oats, barley and rye. The improvement to my health was very noticeable although I was still far from well. I have continued to do without these products in my diet. At least I no longer have need of the wheelchair.

About four years ago I was diagnosed as having Sjögren's Syndrome, Raynaud's Phenomenon and fibromyalgia. Then two years ago I suddenly developed very painful lips and noticed that I could not stretch my mouth without great difficulty.

A rheumatologist diagnosed me as having scleroderma even though blood tests had not revealed anything. I was also experiencing severe problems with my esophagus and tests showed up as dysmotility and severe reflux problems.

I have very few visible signs to indicate that I in fact have scleroderma. My 'draw string' mouth and dry, itchy skin are my only visible signs, but for me the important thing was that I was believed and I also had a name for what was going on with me.

In June 1998 I developed a very severe lung infection, and fibrotic lung disease was diagnosed. It was at this time, that systemic scleroderma was confirmed by a pulmonologist. This year March, my feet and legs swelled up and congestive heart failure was also diagnosed. Apparently this latest problem is connected to the lung disease.

I consume a handful of pills twice a day for diabetes, esophageal problems, neuritis, low thyroid count, Meniere's disease and other problems. I am on a low dose of cortisone for the lung disease and this appears to be helping me considerably at the moment.

But despite all, I try to remain positive, and take each day as it comes. I realize that there are others with Scleroderma who are far worse off than me.

To Contact the Author

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: