I think it would be pretty unusual to have sjogrens without dry eyes. Sjogrens pretty much causes all the mucus membranes to dry up. Mouth breathing can definitely dry the mouth (I know, I am one, along with the sjogrens), as can many medications used to treat PN.

I have very dry lips, but the main problem there for me is my nerve damage to my tounge means that I can't lick my lips which is very annoying. I never noticed how often I licked my lips to moisten then until I was no longer able to do it.

cheers

raglet

Yeah, I wasn't thinking Sjogrens myself Raglet. I don't exhibit the dryness anywhere but the mouth, and no dry lips even.

Yes, I lick my lips a lot to moisten them, so I can just imagine what it is like to not be able to do so regularly.

Update!

After nearly 48 hours not consuming 1 bit of Vitamin C, I am sitting at my PC just before bedtime, and my mouth is barely burning.

To put it into perspective, at this time of night, my mouth would feel like a raging wild fire. It's a dull roar right now. It's there, but it's much improved.

Even the roof of my mouth, where the normal 'bumps' that are on the palate felt as if they were 'swollen' have decreased in size.

This may very well be simply Vitamin C allergy after all. I almost forgot to take my regular Neurontin/Amitriptyline that I take at bedtime. That's the reduction I have felt in the pain factor thus far.

So this may not be PN or MS related after all! But now the question, how do I deal with avoiding Vitamin C? I can't. It's essential for the body!

To carry on the mystery of this condition...

I don't actually now believe C to be the culprit. I'm thinking more about the acidity of foods. Or foods that cause me heartburn.

For example, I had eaten a few garlic flavored crackers just shortly before bed last night. I woke up halfway through the night with burps, garlic taste in the mouth, and burning mouth. Even this morning, still garlic, still burpy, still burning mouth.

I don't usually eat right before bedtime. Perhaps that's why I wake up burn free on most days? It's normally nighttime before the burning comes on. I noted that it doesn't burn on days or nights when I haven't eaten something that makes me gassy.

So next experiment. I'm going to try taking a 24 h antacid tablet daily when I wake up before eating. Going to see if this helps. I noticed that all through my time on steroids before, my mouth was much much better. I was taking 1 of these 24h tablets daily upon waking. I also noted that the mouth was better as well when I did the Candida cleanse diet for a month +, and during that time I was eating such a strict diet of foods, I was avoiding things that caused me stomach upset.

I'm now curious... while I do believe that I have partially PN caused by MS contributing to this mess, is it possible that I have a bacteria in the stomach that's adding to it as well? Hrm!

Do we have problems with or teeth,and the burning is awful,I'm sorry Billye
I read everything these wonderful people wrote,but agree with you it
burns and just get dryer..My Eye Dr, should help he has a mother he adores
who has SS and answers more questions then Dr. I need to see him will
ask. hugs to all Sue

Hello to all members, I just registered to this community, since I too have issues with buring mouth syndrome. Somedays it gets so frustrating in coping with this problem and it is nice to be able to come to this community and tell it like it is. Reading the problems other members have makes me realize that I am not the only one in the world with this problem.

A little bit about myself:
I am a born canadian, living in Edmonton, Alberta. I am of a mature age. My biggest passion is dogs. I only have one dog but if there was a way to take in all the unwanted dogs to love and care for, I sure would do this. I love many crafts, sewing, gardening, walking, and walking and oh yes did I mention walking. Lets not forget a large variety of music.

It is a pleasure meeting everyone in this community and I hope I can be supportive as you all have been to me in the past.

Thankyou
sunflowerlc
Thank you

Welcome.

I also share your passion for dogs. I try and help as many as I can at the shelter. I was planning on going back to school to become a vet assistant, but with PN I don't know if this is no longer possible.

i have suffered from BMS since 1984. i too went to different doctors and they all shragged it of, but because of diabetes 2, the podiatrist subscribed METANX. i have not started taking it, but ohhh i am so hopefull. Reading you all makes me feel better, because anyone i talk to think i am going crazy.
I am very happy i have found you.Also Lyrica was prescribed by the same doctor, but i tried it once and it made me feel strange so i quit.
These medicines are quite expensive, any idea where i could find a better price pharmacy?
i love you all, thank for happening into my life

Regarding dry mouth: I do not have antibodies for Sjogrens but I do have dry mouth and dry mucous membranes in general. Last time i was at my Rheumatologist, he prescribed a drug called Evoxac. It does help me tremendously and I have not noticed any side effects. I believe it is prescribed solely for the treatment of dryness associated with Sjogrens.

Mouth burning: I have never had burning, but after particularly bad flares of neuropathy (with severe autonomic dysfunction), I have had mouth numbness. It is horribly uncomfortable. It feels like I have been to the dentist and have had lidocaine. At that time, it took about two months to resolve. I still have some degree of numbness in my mouth (feels kind of like a wad of hair is in my mouth at times). I know that sounds kind of gross but that is what it feels like.

Mere

I too have the burning mouth and am almost 100 percent sure it is small fiber neuropathy due to my Sjogrens. My problem began this past May 21 when I was in Washington DC with my daughters class...field trip..of all places. My mouth began burning..every inch of it. It felt like I burnt my entire mouth with hot coffee ...it was horrible. It has been a year since that day and I have not had that extreme of a case since, but I still have migrating burning pain in my gums, and the roof of my mouth. My dentist has had enough of me coming in there all the time because he says it is not my teeth..he can't see a problem with them. He said last time...maybe your regular doctor should give you steroids for times like these...when you are having weird pain he meant...LOL. I also get an occassional numb tooth/gum combo thing that may last for a day or two then go away only to show up in a different spot in my mouth. The roof of my mouth mostly hurt/burns right behind my top front teeth. The weird part is that when I touch the area with my fingers it does not hurt when I press on it. I feel that my face is partially numb especially my upper lip. Drives me crazy!!! There is research out there by Dr. Birnbaum at Johns Hopkins in Baltimore connecting peripheral small fiber neuropathy with Sjogrens and other autoimmune diseases...so we are not crazy. They are just now starting to find the connection. Sorry for ranting on and on..hopefully this has helped some...Mary