Just Diagnosed

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!

These diagnosis stories are always something. It took you a year of knowing that something was clearly wrong in order to be diagnosed while your symptoms were attributed to other things. Starting treatment now is at least a step in the right direction. Plaquenil is a pretty typical med to start with. You'll just need to have your eyes monitored while you're on this. I really liked plaquenil because it helped with my fatigue a bit.

Hi there. I am a huge kitty lover also.
When your message popped up I was just thinking how tired I was and I haven’t done anything at all.
I seem to get worse every year regardless of treatment. I was diagnosed with RA in 2009,and SS soon after… A great deal of us have more than one disease. All cases are different but mind is unresponsive to any treatments so far…
Glad to have you in the forum, you will enjoy it. I certainly do.
K.

I'm so glad to hear the Plaquenil is working for you. It's very encouraging. My rheumatologist told me a couple of "horror stories" about people who went undiagnosed for too long and what they have to endure, and she recommended that I don't do "too much research" about the disease because I'd run across these horror stories and freak out. But I believe that being well-informed is crucial to dealing with something unexpected that can impact your life so significantly. I've been reading reviews of Plaquenil and there are a lot of very positive stories there, so I'm trying to remain optimistic.

Stoney said:

These diagnosis stories are always something. It took you a year of knowing that something was clearly wrong in order to be diagnosed while your symptoms were attributed to other things. Starting treatment now is at least a step in the right direction. Plaquenil is a pretty typical med to start with. You'll just need to have your eyes monitored while you're on this. I really liked plaquenil because it helped with my fatigue a bit.

Hi K,

Always wonderful to meet another kitty lover! I can't even imagine not having them in my life. How many do you have? My husband always said he never wanted to have more than three, but he surprised me for my birthday last year with a trip to the Humane Society to get a fourth. (Best birthday gift ever!)

After I'd had several tests and it was determined my heart was okay, the vascular specialist recommended I gradually introduce exercise back into my routine, despite that I had barely any energy and would run short of breath very quickly. The stress test involved walking on a treadmill until you reached the "target" heart rate, which they said would take about three minutes. They made me get off before even one minute had elapsed, and I spent the next ten minutes lying down, panting, my heart racing, while they did the ultrasound. I felt like a limp dishrag for pretty much the rest of the day. The very idea of trying to do any significant exercise is exhausting just to think about! But now that I know the source of my fatigue and have been assured it wouldn't be dangerous (regarding my heart) to do so, I've thought about at least trying to get back on my exercise bike for a few minutes a day. The downside is having to rest for so long afterwards, but I'm told it can only benefit in the long run. (We'll see!)

Kquixtar said:

Hi there. I am a huge kitty lover also.
When your message popped up I was just thinking how tired I was and I haven't done anything at all.
I seem to get worse every year regardless of treatment. I was diagnosed with RA in 2009,and SS soon after.. A great deal of us have more than one disease. All cases are different but mind is unresponsive to any treatments so far..
Glad to have you in the forum, you will enjoy it. I certainly do.
K.

Hi, and welcome to the site!

We've had a few discussion on here about the best exercise to try; I think a lot of us aren't able to exercise as we used to! Past discussions are searchable and can be useful for info- but quite a few people have enjoyed trying yoga and getting back to doing a little exercise that way. There's lots of videos on Youtube so you can try it at home when the time's good for you.

Hi

I have two wonderful kitties. Tomtom is a big yellow tabby with beautiful green eyes.

Kara is black and white. Her face has the state of Maine on it, she is my funny little clown.

I live in a large condo complex where cats turn up and I adopt them. Love them. We also have a border collie mix we adopted. LacyLu is so funny. She and Kara are BFFs.

Awwww, sweet. We need our fur babies.

If it helps any, the side effects from Plaquenil like upset stomach do go away after a little while. I have found the stuff to be a real life saver. And I second what Jules said about exercise…find what works for you. Its well worth it. I hope you have good luck finding your path too.

My fur babies give me so much comfort. I haven’t noticed any complications yet.