I was diagnosised with Sjogren's about 5 years ago. I have suffered with dry eyes and dry mouth most of these 5 years.Right now I take Restasis for the dry eye and Cevimeline for the dry mouth. Currently I'm having an awful flair up of painful, burning mouth. My Reumy put me on Fluconozol and NYstatin thinking it might be THRUSH, which it has been in the past and these two drugs usually help, but this time it must be something else,as I've had no relief at all. The PC put me on Paroxetine and I have no idea why. That isa mind altering drug. Hum-m-m-???My mouth feels like it has sores all inside my cheeks and my tongue. The pain is awful! I can't eat and i can barely talk. Does anyone know what is causing this awful pain?
There is a condition called (imaginatively!) Burning Mouth Syndrome- cause not clear, and treatment not always successful, but I did find out a tip which helped me- Bicarbonate of soda as a mouthwash. Here's a couple of links explaining it:
http://curebms.blogspot.co.uk/2009/05/curing-burning-mouth-syndrome.html
http://www.medicinenet.com/burning_mouth_syndrome/patient-comments-2967.htm
Apparently nerve pain medications can help, like Amitriptyline, but I'm on that anyway so it hasn't helped me. Obviously staying away from salty, spicy foods etc, but I think anyone with a dry mouth would anyway...
Jules said:
There is a condition called (imaginatively!) Burning Mouth Syndrome- cause not clear, and treatment not always successful, but I did find out a tip which helped me- Bicarbonate of soda as a mouthwash. Here's a couple of links explaining it:
http://curebms.blogspot.co.uk/2009/05/curing-burning-mouth-syndrome...
http://www.medicinenet.com/burning_mouth_syndrome/patient-comments-...
Apparently nerve pain medications can help, like Amitriptyline, but I'm on that anyway so it hasn't helped me. Obviously staying away from salty, spicy foods etc, but I think anyone with a dry mouth would anyway...
Thanks so much for your replies. Any help I can get at this point is extremely appreciated. I'll try the baking soda rinse. I'll let you know if it helps.
Thanks so Much,
Lady Deda
Hi,
I get frequent sores in my mouth. I feel like even my teeth hurt and I dread Dentists.
Baking soda and salt in equal measures for mouth and nasal wash. Hope you feel better soon.
I had same issues , and for the life of me couldn’t figure it out…To much acid,.?, I had done several saliva tests and realized my saliva was pretty acidic. I tested several people and mine was def on the higher side. I think when our saliva glands work correctly the saliva acts as a buffering agent. I attribute the acid to malfunctioning glands. I started a somewhat alkaline diet and also started taking alka tabs. These pills were highly recommended from a friend that lives in the Netherlands. I still have mouth issues but it’s not as bad as it was.
I don't know what causes it but I get it sometimes too. When the burning sensation starts I usually try and take some lysine and it seems to help but just try one a day. If you take too often, it can make your mouth feel like you have eaten something too acidic and that feels like it causes the burning!
I absolutely hate it when people go on the web site with all kinds of pain and complaints, but when they have improved or found a cure for whats been bothering them - they never post an update. So here goes. ...when I wrote the original post about 11 days ago I was in awful pain and discomfort with mouth burning and mouth sores. After seeing three different doctors - I finally have a diagnosis. My mouth problems are due to "Lichen Planus". It can be diagnosised byENT or a dermatologist. Oral lichen planus (LIE-kun PLAY-nus) is an ongoing (chronic) inflammatory condition that affects mucous membranes inside your mouth. Oral lichen planus may appear as white, lacy patches; red, swollen tissues; or open sores. These lesions may cause burning, pain or other discomfort. Symptoms can usually be managed, but people who have oral lichen planus need regular monitoring because they may be at risk of developing mouth cancer in the affected areas.
This helped me because I at least had a name for what I had. The ENT did not prescribe anything for my Lichen Planus as he said it was improving and on its way out. If it continues to hurt and get worse he will prescribe cortisone in an oral form and that usually takes care of it.
I'm feeling so much better. Thanks for listening. I love that this site is available to all of us who suffer with Sjogrens each and every day of our life. It helps us to vent and have someone to talk to who truly understands what we are going through.
((Hugs))
Lady Deda
So glad you found an answer and are feeling better!
Thanks for sharing your update Lady Deda! And even better to hear that it is improving.
Great information. Thank you for the update.
My ENT finally prescribed something for the lesions in my mouth- Aetonide Dental Paste. It’s difficult to use, as it is sticky and hard to paint on the lesions on my cheeks and gums, but it is working. My ENT said there is nothing more I can do for you, you need to go to an oral pathologist, so they referred me to one. She was very familiar with Lichen Planus and said she would send scrapings of my mouth into the lab. She is suspicious of Lichen Planus plus yeast infection together. Results aren’t back yet. She also gave me a list of foods to avoid like tomatoes, acidic juices, strawberries, wine, chocolate. UGH! I’ll post when the results of my lab tests are in.
Oh boy…. glad there is some relief but I do get the struggle.
The Oral Pathologist called me to tell me that the scrapings she did on the inside of my cheeksand gums shows no sign of yeast infection, so I guess I’ll just keep using the Aetonide Dental Paste to control the Lichen Planus and so it goes…thanks for listening.
Lady Deda
Hope you’re finding something you can eat, with all those (yum!) barred foods!
It sure is a limited list but I am finding some things to eat, but they aren’t my favorites… UGH! The Oral Aetonide Dental Paste wasn’t working so well, so the oral Pathologist prescribed something else, the name is,Prednisolone SOD Phosphate 15 MG/5 ML. It is still a steroid, but its a swish and swallow. Much easier than the paste!! Sure hope it does the trick. I’ll keep coming back to post until I find something that works. Thanks for listening.
Lady Deda