Estelle 454, i was diagnosed with primary sjogren's because i tested negative for all other auto immunes. my flare ups are usually joint inflammation, it seems to come and stay for a few weeks, then just leave. it can be very painful and affect different joints with every flare up. for instance my toe joints hurt for weeks, i didn't even know that was possible!! the good thing with primary sjogren's is the joint inflammation doesn't do permanent damage like RA. but it can knock you down for a while. i am on plaquenil now and haven't had a flare up since, so i'm hoping it will help. i always have dry eyes and mouth,(tongue stays a little swolllen all the time), take meds for both, and fatique is worse some days than others, i am hoping the plaquenil will help with that too. personally i fear the joint pain the most, but at least now i know what it is and can quit thinking i'm crazy. good luck, my best advice is to find a good dr! i'm in the process now, i don't care how far i have to travel, i've learned over the last 5 yrs and seeing over 40 diff drs, that they are not all created equal!!
I have secondary Sjogren's due to scleroderma, but I do not and probably never will have the classic antibodies for Sjogren's show up. I too, like dlt48, take meds for dryness. Fatigue, I think is part and parcel of flareups for any of the AI diseases and particularly for Sjogren's.
I have Sjogren's, diagnosed in 1998. My digestive problems range from nausea to being in such excruciating, doubled-over pain I think I'm having a bowel obstruction or something life-threatening. I actually called 911 last month and spent the night in the ER (that is about $800 I didn't have and wouldn't have risked spending if I didn't think it was an emergency!)
I have a hiatal (sp) hernia with horrid reflux, so my belly/esophagus aren't happy in general, ever. My swallower doesn't swallow right, my mouth is too dry to eat anything that isn't swamped in gravy or "sauce" (eating only food with the correct viscosity counts in this department), and acidic stuff kills - when I first eat in the morning, I often chant "don't throw up don't throw up don't throw up" because sometimes it makes me so sick to eat. BUT, if I don't eat - I get sick. 'argh!
If I only had tears, I'd bawl... but then again, maybe the lack of them is a good thing?!? No one likes a cry baby... 'sob
I have primary Sjogrens. My flare ups are increased joint pain, extreme fatique, my eyes seem to get drier to the extent that I get abrasions on the eye. It seems now suddenly without warning 5 days ago I suddenly woke up with total deafness in left ear with a nerve racking high pitch whistle and roaring. Went to audiologist and had hearing tests. I lost all hearing in left ear and 1/2 half in right due to autoimmune Sjogrens. This is very scary and I really wonder what is next. Good luck