dry mouth

DR SAYS I HAVE GEOGRAPHIC MOUTH AND GAVE ME SOME LIQUID MEDICINE TO SWISH AROUND IN MY MOUTH WHICH TASTED NASTY.  IT WORKED FOR A BIT AND WENT AWAY.  NOW ITS BACK AND NOW I CANT SEEM TO GET MY TONGUE TO QUIT BURNING.  SUCKS

Karen, there's also something called "burning mouth syndrome". I don't know much about it but it might be worth googling.

Karen there is something called burning mouth syndrome or also called burning tongue syndrome. I have it but I've been very fortunate that mine is not bothering me right now. There is a group on Facebook if you do Facebook. They're pretty active. There's also a burning tongue group on Patient too. You definitely need to go see your dentist about this. There is no cure for it but there are a variety of treatments that people will use to help with the pain and discomfort of burning mouth syndrome.

​Thanks, Karen

Good post, but I would take you up on the assertion that a lip biopsy is the sure way to determine whether the patient has Sjogren's or not.

The Sjogren's boards on this site are littered with people who've had a negative lip biopsy but clearly have the symptoms of the condition, and have been diagnosed with it. I'm afraid Sjogren's is a slippery customer!

I've never had a lip biopsy myself. It's not entirely without risk of permanent nerve damage and it would have been irrelevant in my case as I would never agree to take any of the drugs prescribed for Sjogrens - e.g. DMARDs and immunosuppressants.

However, I can confirm that all the usual inflammation markers associated with Sjogren's come and go in my twice-yearly blood tests, with very little relation to my symptoms at any given time. Severe dry mouth, with painful, bleeding cracks at each corner of my mouth, was my first Sjogren's syndrome, lasting about a year before it suddenly cleared up (to be replaced by dry eyes and peripheral neuropathy). However, the anti-salivary gland antibodies only showed up in my blood two years later, when the mouth symptoms had largely cleared up!

That's good to know because my rheumatologist did the blood test for me which came back negative and I told her I did not want to do the lip biopsy. I figured I would just continue to treat the symptoms. Although my mouth is very dry it's not like yours where you have cracks at the sides of your mouth or anything. My biggest problem is with my eyes they've gotten so dry that I have problems reading. I've tried the Restasis which I'm on now as well as the OTC drops. I wear prescription glasses that are bifocal but I went out the other day and bought reading glasses I put those over my prescription glasses and that helps me read a little bit longer. Because I can read for a little bit but within about 5 or 10 minutes of reading my eyes start to blur and then I can't see the words

I sympathise totally about the eyes. I'm just coming out of a year-long problem with particularly dry eyes. I'm a bit unusual (and lucky!) in that all my Sjogren's symptoms come and go, sometimes leaving me in periods of total remission, where I have no symptoms of any kind. I still have to use eyedrops containing hyaluronidase several times a day, but seem to be on the mend at the moment. Last year it got to the point where I was developing the start of corneal abrasions on my left eye, but they've cleared up now. I can't read for too long either without things going blurry, but I'm not too bad at the moment. I always use my drops before and during reading or computer work. The ophthalmologist also told me to try and remember to blink more often when I'm reading too, to keep spreading the tears over the surface.

Do you wear industrial goggles when you go out in cold, dry, windy weather? I do. I got them at a British opticians, so they're optically neutral. (Some of the cheaper ones can distort your vision a bit.) I find these help a lot in bad weather, and I'm past caring what I look like!

Funnily enough, the dry mouth has rarely bothered me since that first severe attack more than 20 years ago. My mouth and throat get very dry during the night, and I occasionally have a bout of my lips sticking to my gums, but it never lasts very long.

I've got so used to this over the past 22 years that like you, I just treat the various symptoms while I have them and assume they'll go away if I wait long enough!

I like your sense of humor. But since I suffer from chronic pain I am at home on my couch most of my days especially bad days because I can not afford to fall. So I don't think the goggles will be necessary. My Dr did tell me to blink a lot so I make a point of doing that. I have also recently discovered that if I wear readers over my glasses I can see for a little bit longer. Lol see I don't care how I look either.

Sorry to hear you have such severe health problems, but glad that you're making some progress with coping with your dry eyes. Sometimes the solutions we come up with ourselves turn out to be more valuable than a doctor's advice.