This is my life story since Primary Sjogren's Syndrome and Systemic Lupus (SLE) began to rule my life in 1987.
It most likely began when I was a small child, but no one knew it then. I was hospitalized many times with kidney and pancreas problems as young as 7 years old. But, it became obvious in March 1987. A flu bug took me months to recover from and when I did recover, I was left with a blistered mouth and tongue, a low grade fever of 100ºF, and extreme, profound fatigue.
After my family dr sent me to an ENT dr and blood tests were done, it seemed I had Mono. This was the summer of 1987. All the symptoms remained but we knew recovery from Mono would take time and I really wasn't worried or concerned. It was more an inconvenience and "pain in the butt"! Especially the fatigue.
We had already planned a beach vacation in New England and had rented 2 beach homes near Gloucester, MA. I thought what better than soaking up the sun's rays on a beach to recover from it ... little did I know how much the sun would become my enemy. I soon learned.
After all that sun and a great tan, my symptoms worsened. In fact, it began while on vacation. I was always so very tired, sleeping a lot, short of breath and unable to eat much because of the constant mouth & tongue blisters. When I got home no better and in fact worse, my ENT dr began to worry that this was much more than Mono and he decided to do more blood tests and send it all to the CDC (Center for Disease Control) in Atlanta. BTW, an ENT dr is an ear, nose and throat specialist. The results came back with the EB virus (usually means Mono), but a negative specific Mono test. Also the CMV virus and a couple more little known virus's. By then, my condition worsened even more. In addition to my severely blistered mouth, overwhelming fatigue and 100º fever, I had developed recurring diarrhea, chest pain, wheezing, and very swollen legs, feet and hands.
I was the manager a Savings and Loan Office of our local bank ... actually the only employee and answering to 7 Directors. A demanding, full time position I held for 23 yrs - at that time, Fall 1987, it was 20 yrs. The work had to be done correctly and promptly and I don't know now how I even made it in the office, let alone functioned correctly. I was truly sick. Worse, with seemingly no answers why.