Boo: CREST Syndrome

I was born in 1961. I am a college graduate. I was always a hard working and very active socially. I live hard and I play hard.

In late 1992, I caught a virus that manifested as a flu-like illness with a bright red pinpoint rash covering my legs. Three months later I was hospitalized due to dehydration after the prolonged flu-like illness.

About six months after that, my arms were numb, sore, and swollen. The swelling was so bad that the nerves in my arms were malfunctioning and the pain became unbearable at night. I was diagnosed with carpal tunnel syndrome and had a surgical release done on my right wrist. This did help me tremendously in the short term.

After the surgery I was referred to a rheumatologist. The surgeon said, "You have what appears to be full blown rheumatoid arthritis (RA)." After consulting with the specialist and seeking a second, confirming opinion, I began treatment at the local university's rheumatology clinic.

Due to the fatigue and general ill health I was experiencing, I left work and did not return for two and a half years. The road to becoming diagnosed was long!

The rheumatologist knew I had a problem but was unwilling to put a label on it for some time. My symptoms, at times, pointed toward multiple sclerosis (MS).

Finally in 1994, it was labeled as CREST syndrome, which is a form of systemic scleroderma. I have been treated with methotrexate, Plaquenil, prednisone, cortisone injections, various anti-inflammatories, and kindness.

Ten years later, I have blood work drawn annually and see my specialist for a progress report every six months. I also have had x-rays taken every eighteen months to monitor the calcification problems.

I have been back to work full time for five years, and continue on a maintenance dose of anti-inflammatories to help control the pain. The fatigue continues to be a constant battle. At forty-one, I feel old!

I have particular difficulty with my hips, hands, wrists and spine. I am having increasing problems with my vision with floaters, and I have tremendous disfigurement around my hips. In certain areas I am completely void of muscle mass and strength, or the connective tissues remain hardened, rendering them useless. My skin has lost most of it's elasticity and I am slow to heal.

I continue with low-impact exercise and hope to always push forward with my life. The worst part of the experience has been that I can never get a hundred percent relief and that is both physically and mentally exhausting. As a result, I have been quite depressed at times. The good news is that the progression of the sclerosis is no longer apparent. In fact, even though I have residual damage, it appears that the virus may have been knocked out by the methotrexate or possibly it burned itself out over time.

What a crazy disease! The uncertainty of the prognosis is completely frustrating. I have good and bad days. I may retire to a warmer climate, but I would hate to lose out on the New England change of seasons.