Hello everyone! Hope to find some good info here and, as I learn and find my way, eventually help others. I've apparently had Sjogren's for about a year but was just diagnosed last week.
It all started one day in August of last year. I put in my contact lenses and my eyes immediately started burning and my vision went blurry. I took them out and cleaned them; same result. I opened a new package of lenses; same result. At the time, I misattributed the cause to a medication I'd been taking for a few years; one of the side effects listed was "may change how your contact lenses feel on your eyes." Little did I know!
Fast-forward to January of this year. I noticed I'd been feeling more thirsty than usual and drinking a lot more fluids. Whenever I was concentrating on something (I'm a mixed-media artist and often spend hours absorbed in a project), I would suddenly realize that I'd been "smacking my lips" like you do when you're parched. I started sleeping longer hours (sometimes as many as 12-14 a night), taking naps on my days off work, and started putting on weight fairly rapidly. I had been riding a stationary bike three times a week, but that had become impossible because I would grow weak/ exhausted almost immediately and start panting for breath within a minute.
Since 2002, I have had a condition called Immune Thrombocytopenic Purpura (ITP), an autoimmune disease in which your platelets are destroyed, so I get regular blood tests to ensure the medication (the one I blamed for my eye problem!) remains effective. When I went for my test in January, the nurse said, "I've never seen your numbers this low; how have you been feeling?" "Pretty crappy, actually," I said. "I have almost no energy lately; I run short of breath just walking out to the mailbox, and my hips and knees have been hurting." She told me I was anemic and I had to come back in a week for another test and talk to the hematologist. He asked me if I'd been on a drinking binge! I said, "As you may recall, you told me I couldn't drink alcohol back in 2002 when I was diagnosed with ITP. I don't drink!" He recommended iron supplements for the anemia but didn't do any other kind of follow-up.
In March I was due for my annual physical and mentioned my symptoms to my GP. I said, "I feel like I'm turning into a slug. I can't do anything that involves significant movement without getting short of breath and then I have to rest. I sleep a LOT and still feel physically weak and tired." He was concerned about the shortness of breath and by then I was also having fairly regular heart palpitations. He tested me for thyroid: negative, and I was sent, at no inconsiderable expense, to heart and pulmonary specialists, had a CAT scan, a stress test, had X-rays, wore a heart monitor for two weeks...the list goes on. Nobody could figure it out.
Then, because I had mentioned pain in my knees and hips, my GP finally sent me to a rheumatologist. (He said inflammation from arthritis could cause some of the symptoms, though he thought it was unlikely.) I described my symptoms to her and added, "Also, there's a new thing. Sometimes when I swallow food, it gets stuck about halfway down. It's very painful. Carrots are especially bad, for some reason." The rheumatologist asked how often that happened; I told her it was becoming more frequent; about 4-5 times a week. She sent me for an endoscopy, which I had a week later. When I came to, the surgeon said I had esophagitis and prescribed medication. When I went back to the rheumatologist for follow-up, she said she had run a particular blood test and informed me I had Sjogren's. She gave me a brochure and described the symptoms and it all came together. Thank goodness for her! Who knows how much longer I'd have to deal with this and how many more tests I'd have to endure before someone figured it out!
So I've been on Plaquenil for about a week and a half. I'm not real fond of the dizziness and upset stomach, but I take it before going to bed and that minimizes the impact of the side effects. I'm happy to finally know what's going on and that there may be relief ahead!