Burning mouth syndrome (BMS): Is this an autoimmune disease?

Posted by iluvkatz @iluvkatz, Jun 8, 2016

I have had BMS for 14 months. Does anyone know if this is an autoimmune disease?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@diannesmcneill

I Stopped drinking our city water. A few have commented on certain kinds of bottled water not being good for their mouths. Smart water is suppose to be good. You might research that. I too had a detailed list of what happened when and then this happened in my efforts to figure out my Burning mouth. Good work girl! Have you had allergy test for dental materials? I did that twice when I had the metal taste. Has your neurologist or doctor given you baclofen small dose 5mg 3 to 4 times daily. That was calming

Jump to this post

Baclofen was calming and also helped with the metal taste plus helps a little with pain. You might try focusing your mind on something else. Put an ice pack on your body anywhere but not upper body. Your thoughts will transfer to the cold on your body. Put a rubber band on your arm and when you taste the metal flip the rubber band to transfer your thought to that pain. You may have other ideas of things you can do to transfer your thoughts to something else in lieu of the metal taste. Have you tried different toothpaste and different mouth washes. Have you tried Tom’s toothpaste and mouthwash. Do you chew sugarless gum yourself of the metal taste. Have you tried Tom’s toothpaste and mouth rinse? Dry mouth is a biggie and drinking more water and using mouth moisturizer spray. One benefit of baclofen is if when you drink water you have repeated urgency to pee, well baclofen calms your bladder so you don’t have to pee so much. I get episodes of thinking I have a UTI and sometimes I do and sometimes I don’t. I use a hormone vaginal cream and use my baclofen to calm my bladder.

REPLY
@diannesmcneill

Baclofen was calming and also helped with the metal taste plus helps a little with pain. You might try focusing your mind on something else. Put an ice pack on your body anywhere but not upper body. Your thoughts will transfer to the cold on your body. Put a rubber band on your arm and when you taste the metal flip the rubber band to transfer your thought to that pain. You may have other ideas of things you can do to transfer your thoughts to something else in lieu of the metal taste. Have you tried different toothpaste and different mouth washes. Have you tried Tom’s toothpaste and mouthwash. Do you chew sugarless gum yourself of the metal taste. Have you tried Tom’s toothpaste and mouth rinse? Dry mouth is a biggie and drinking more water and using mouth moisturizer spray. One benefit of baclofen is if when you drink water you have repeated urgency to pee, well baclofen calms your bladder so you don’t have to pee so much. I get episodes of thinking I have a UTI and sometimes I do and sometimes I don’t. I use a hormone vaginal cream and use my baclofen to calm my bladder.

Jump to this post

Really feel for you. I hope you can figure it out. The neurologist I went to for the burning prescribed the baclofen. You only want to take the very lowest dose of 5mg. Keep trying and pray.

REPLY
@diannesmcneill

At times I did have a metal taste in my mouth. In the beginning I had gotten 3 new crowns. My burning started after that. I tested for allergies and was allergic to a material used with crowns. I replaced the 3 crowns only dentist still used material I was allergic to. I continued to burn so I had all 3 crowns replaced again. I kept burning. I then had a root canal and was told I did need the root canal after being told for 3 years I did not. Burning continued. I decided to have the burning tooth pulled and sent for analysis. I had 12 different kinds of bacteria. Took antibiotics. Burning continued. I fought hard to find answers. Finally a Dr at emergency room got my burning to stop and that’s when I got the esophagus scope at her recommendation. I did find that gabapentin increased the burning. Pregabalin caused other burning at other areas on body. Pain pills worked to reduce the hot burning but that only lasted so long. You might talk to your dr about trying a reflux treatment with PPI and coating esophagus with sucralfate just to see if after 30 to 45 days you see improvement or ask Dr about trying Pepsid complete chewable tablets OTC. My family Dr had no faith that treating reflux would stop my burning but he is happy it did work. The metal taste in mouth is the worst. Have you had any new dental work done? I read every article I could find trying to find answers. Good luck!

Jump to this post

My burning mouth started after a CT scan WITH CONTRAST!

REPLY
@diannesmcneill

I Stopped drinking our city water. A few have commented on certain kinds of bottled water not being good for their mouths. Smart water is suppose to be good. You might research that. I too had a detailed list of what happened when and then this happened in my efforts to figure out my Burning mouth. Good work girl! Have you had allergy test for dental materials? I did that twice when I had the metal taste. Has your neurologist or doctor given you baclofen small dose 5mg 3 to 4 times daily. That was calming

Jump to this post

My nutritionist told me to ONLY drink bottled water because of the fact I’m autoimmune. She said by the time you get any notice from the town that you need to boil your water because something is wrong with it you’ve already drank it for god knows how long the nasty infected water. And of course being autoimmune you could be very sick. Or worse. So I stick to bottled water despite the cost….and it’s definitely an expense I wish i didn’t have because it’s about $250 a year just for water to drink. 🙄

REPLY

I drink sufficient amounts of water and it’s bottled, purified water.

I have tried several types of toothpaste, mouth moisturizer, sugarless gum, and rinses, that made no difference. Gum tastes good when I’m chewing it, but the bitter taste still overrides it. Dentists and doctors have examined my mouth and find nothing unusual.

I have an appointment with an allergist in a couple of months. That is really designed for my nasal congestion. I have a lot of drainage, stuffy, then pours water. Trying to figure out if I’m allergic to something.

I haven’t heard of baclofen. I’ll explore it. Thanks.

REPLY
@celia16

I drink sufficient amounts of water and it’s bottled, purified water.

I have tried several types of toothpaste, mouth moisturizer, sugarless gum, and rinses, that made no difference. Gum tastes good when I’m chewing it, but the bitter taste still overrides it. Dentists and doctors have examined my mouth and find nothing unusual.

I have an appointment with an allergist in a couple of months. That is really designed for my nasal congestion. I have a lot of drainage, stuffy, then pours water. Trying to figure out if I’m allergic to something.

I haven’t heard of baclofen. I’ll explore it. Thanks.

Jump to this post

Do you take Benadryl for your nasal drainage. Curious if Benadryl helps your burning?

REPLY
@ksdm

My burning mouth started after a CT scan WITH CONTRAST!

Jump to this post

I had a long list of what my burning mouth started after. The diagnosis of reflux ( silent) and Barrett’s was so far removed from items on my list. I am wondering if coating your mouth and tongue while taking sucralfate liquid to coat esophagus makes a difference in the metal taste after using it for a couple of months along with a ppi. I certainly found my miracle reflux treatment for my burning mouth and metal taste and overly sensitive nose smells.

REPLY
@diannesmcneill

Do you take Benadryl for your nasal drainage. Curious if Benadryl helps your burning?

Jump to this post

I never had any burning in my mouth. The only burning I had was intermittent burning of a quarter size spot on my right foot that I had for years. Was told by doctors it was not neuropathy. Idk. I don’t see that as related, but it has almost diminished.

REPLY
@diannesmcneill

I had a long list of what my burning mouth started after. The diagnosis of reflux ( silent) and Barrett’s was so far removed from items on my list. I am wondering if coating your mouth and tongue while taking sucralfate liquid to coat esophagus makes a difference in the metal taste after using it for a couple of months along with a ppi. I certainly found my miracle reflux treatment for my burning mouth and metal taste and overly sensitive nose smells.

Jump to this post

I can’t rule anything out, because I don’t know what it is, but to me….the taste doesn’t seem to be from a substance in my mouth. It feels like it is from my tastebuds. My lips taste like the bitter, it seems like it’s in my gums even. Also, when it hit, it was sudden. Bam! Suddenly my mouth was tasting this horrible metallic taste. I was upright, driving my car and no substance was in my mouth. This is why it seems to be nerve fibers affected. The ENT feels covid damaged the nerves.

REPLY
@celia16

I can’t rule anything out, because I don’t know what it is, but to me….the taste doesn’t seem to be from a substance in my mouth. It feels like it is from my tastebuds. My lips taste like the bitter, it seems like it’s in my gums even. Also, when it hit, it was sudden. Bam! Suddenly my mouth was tasting this horrible metallic taste. I was upright, driving my car and no substance was in my mouth. This is why it seems to be nerve fibers affected. The ENT feels covid damaged the nerves.

Jump to this post

All of my doctors and dentist thought I was dealing with a nerve issue. Trigenial nerve but did not spell that right. I was given amitripline and gabapentin first then changed to pregabalin and several other medicines my doctors tried for nerve damage.I just shared my experience. None of my doctors thought reflux treatment would work. We just tried and it took about 2 months for me to improve. 4 months out now and I am sharing my experience. I don’t ever notice anything coming up into my mouth from esophagus. To me it seems like my esophagus was so damaged by the reflux that the metal taste, overly sensitive smells, burning mouth, tongue, and tooth sensations start at the damaged esophagus from the reflux and that sends the nerve signals to my mouth. My mouth tissues and tongue would swell and just hurt so bad. I hope you find your answers. I went through so much HELL and searched for answers for so many years…I just wanted to make others aware. Look online for Reflux and metal taste in your mouth. Metal taste in your mouth is a symptom of reflux.print out the article and take it to your doctor. I recommend an esophagus scope because when you have reflux you could have Barrett’s. My doctor did not think an esophagus scope would help me at all. Well it helped get my final diagnosis after almost 4 years of searching. Remember that treatment for reflux results can take from a few weeks to a couple of months. Sucralfate liquid 4 times a day with ppi 40 mg twice daily and baclofen 5mg 4 times daily sure gave me results. Good luck!

REPLY
Please sign in or register to post a reply.