Oh my gosh! I can't believe I found this post, I am so glad!
I have had lupus and fibromyalgia for about 15 years and seemed to mostly be maintaining the same level of symptoms... until 2 years ago this summer. Then all hell seemed to break loose. I became even more fatigued than usual, my mouth and eyes and skin became so dry. It was awful, in the mornings when I woke up I literally had to peel my tongue off the roof of my mouth because of the desert dryness in my mouth. Then I got weird swelling at the base of my neck and in my armpits and the sides of my face (parotid glands) and my tongue became so swollen that it has teeth marks on it all the time because it presses against them. My voice is hoarse all the time. Then I got weird nodules between the joints of my fingers, then my toes. So, go to Rheumatologist. I go to family doc. I go to endocrinologist. New diagnosis' galore. Hashimoto's, Raynaud's, Rheumatoid Arthritis. Sjogren's. Now, fast forward two years... my mouth is always dry, but now it actually burns in there like a neuropathy type burning pain. My tongue is so swollen that I have not been able to see my throat for over two years. I have almost no sense of taste now, I can taste sweet and salty, and anything with pepper, even black pepper, just burns my mouth so much. I brush my teeth all the time, and rinse with non alcohol mouthwash but I have a terrible taste in my mouth, sometimes it is almost metallic tasting. So, a few weeks ago I cough up this ... this... THING. Nasty little ball that smelled like rotten eggs that rolled in death. I immediately think I must have some weird poop throat cancer, but thanks to the internet I soon found out it was a tonsil stone. I had never heard of tonsil stones before. I tried to look at my throat and so did my husband but we can't see it. I have no idea if there are more so I just keep gargling and trying to feel back there with my finger. I have gotten several more out, even from the roof of my mouth above the tonsils, and under the tongue in the throat. I am thoroughly disgusted. I'm on methotrexate, and steroids, and plaquenil and nothing is putting me in remission or lowering the swelling. These tonsil stones are the last straw. It's bad enough that I am so sick, at least I shouldn't have to stink. : ( Does RA cause burning mouth syndrome? Have you found a solution to your taste symptoms? Are the tonsil stones caused by the RA? Thank you so much for your post.View Thread