Mouth pain over a year, no help or end in sight

Posted by cfreeman @cfreeman, Jul 19, 2023

I have had mouth pain for over a year. Mostly the tongue. I have seen several dentists, orthodontists, ear, nose & throat specialists. No one can seem to help me so now I contine searching for help and not sure where to turn. I want my life back and not be in constant pain as these issues have taken over my life.

I have taken care of my teeth and mouth my whole life. My dentist back in the 80’s decided to remove 4 molars to make room for my wisdom teeth, to date I have had 1 root canal and a few fillings and one wisdom tooth removed. The material in the crown after years started to cause me issues as I became allergic to the materials and this was replaced, I thought this was the reason for my tongue soreness on that side but wasn. I had an extra cusp on a top molar that jetted off the tooth towards the tongue that was pointy and thought this was another reason for my issue as it was poking my tongue.

Doctors in my area said there were no issues, but this issue has remained, after seeing my doctor and having bloodwork, I went to see the ENT. Bloodwork was normal and ENT stated it was burning mouth syndrome and this was the beginning of this cycle I have been on for over a year. Went to my childhood doctor for more bloodwork and sent me to a different ENT. The ENT felt it was the teeth causing the issue. The next dentist eventually replaced the crown, but a few teeth are still sharp to me, but they state they do not feel anything.

The ENT did an MRI to rule out this as a nerve issue and did a biopsy on my tongue as there was a bump this whole time and was getting bigger. It was a swollen saliva gland, and cancer was ruled out and they pointed back to the teeth as the issue. The back left 3 teeth and right-side has 2 teeth that cause pain but the back right side has been the worst through this whole ordeal that pokes and irritates the tongue and one tooth scratches my cheek. This has been painful causing my tongue with on-going soreness.
Resolution I have been told are the following:
Do nothing you will get used to it, wear a retainer, or put wax in the area. As you can see these are not realistic options for the rest of my life.
Procedures performed since the start of these issues:
Attempt to smooth problem areas.
The top right wisdom tooth was eventually pulled due to a cavity and that provided some relief.
Bottom right wisdom tooth has been smoothed almost flat, it’s a bit better but the side close to the tongue feels like a knife and irritates the tongue.
The top right molar had been filled by a dentist to cover the point of the extra cuspid on the back side, this made the tooth wider and sits on my tongue and feels like sandpaper and something is still pointy on it and something scraping my cheek as well, not enough to show major signs but can be felt by me.
The bottom left wisdom tooth feels sharp mostly around one cuspid area and rubs on the tongue.
The top left wisdom tooth has chips, pokes my cheek and it sits at an angle.
The top molar is shaped oddly and rubs on my tongue when I talk. I have been told it could be hypersensitivity or nerve issue. I do not believe either since when I wear a retainer the pain is not as severe. Also some smoothing has helped. I went off gabapentin to see if it was causing pain as I was on it for my back but have not had any change as far as my mouth. I now am getting headaches but maybe due to stopping gabapentin. I'm not sure where to turn.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

CFreeman.. understandable your frustrations same here! I have a mouth piece for upper teeth. It does help some for keeping pain at bay. I gargle with baking soda and use Biotene gel and or mouthwash. It helps. No one has helped me either..
A television program I watch which offers vitamin supplements, hosted by Dr Richard Becker, BioInovations a TX company says Alpha lipoic acid is treatment for Burning Mouth Syndrome. He offers medical research and takes call in from listeners. Keep trying.. Hugs

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@healthybon

get tested for oral herpes by an infectious disease dr...see if you are high out of normal range..this is what my dr is looking at right now. she started me on valtrex because my numbers are high. it doesn't hurt to try.....i hope this will bring you success.no definitive answers to report yet but praying this IS the reason I have BMS.

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@healthybon thank you for the information worth a try. Good luck with everything.

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@swamplady

As I posted about the Burning Mouth Syndrome I can see a few of the same issues that I experienced now for over 4 years. Teeth hurt the tongue and inside my lower lip is sore and raw, everything I eat hurts my mouth. Eating is not a pleasure! I use Biotene
Gel it's soothing.
My problem started after bunion surgery as well as neuropathy. To date no one has been able to help... still searching.

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Are you in any of the BMS groups on Facebook? They are very helpful. I’ve had it nearly 18 years now and I can usually deal with it.

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@dustycat52

Are you in any of the BMS groups on Facebook? They are very helpful. I’ve had it nearly 18 years now and I can usually deal with it.

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Thank you I will check it out. Not sure what is causing the issues I'm having. Feels like not enough room in my mouth especially the top. Odd though I didnt seem to notice for 40 years. Also strange some teeth or part of some teeth feel sharp to my tongue and cheek. Hard to live this way as I keep thinking back to a few years ago when I was happy and enjoying life. My family is tired of it as so am I. I just keep hoping for a resolution. I'd even pull the 2 main teeth bothering me but no dentist will.

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@jwkelly72

Don't want to sound foolish but what about getting all your teeth removed and getting dentures. My father did that after years of suffering and trying nerve numbing liquids to no relief. His mouth was temporarily sore as he got use to the false teeth, but now pain free

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I had the same mouth pain and for 2 years I went from dentist to all specialists.
We finally found out i now had Osteomyelitis of 3 out of 4 jaw bones and had to have those removed.
The culprit?? An old root canal that had a very severe infection.
I had all my teeth removed and implants and teeth
Done in 1 appt for 35%of the US cost by Dr Garita in San Jose, Costa Rica ... He's the best... Teaches in Miami.
They don't sue people in CR... Wonderful Country.

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@jjrn

I had the same mouth pain and for 2 years I went from dentist to all specialists.
We finally found out i now had Osteomyelitis of 3 out of 4 jaw bones and had to have those removed.
The culprit?? An old root canal that had a very severe infection.
I had all my teeth removed and implants and teeth
Done in 1 appt for 35%of the US cost by Dr Garita in San Jose, Costa Rica ... He's the best... Teaches in Miami.
They don't sue people in CR... Wonderful Country.

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Did your teeth feel sharp to your tongue? Did it feel like there wasn't enough room in your mouth? How were you diagnosed? I've had mri's, scans on my mouth, bloodwork. You traveled to Costa Rica, wow!

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@swamplady

To Gracie, I will check with your suggestion on the Facial Pain Association.
I am starting ala 1200 mg day and
Curcumin (spelling?) Vitamin d as well. Been taking but increasing mg's. Taking 300mg Gabapentin for the neuropathy burning in feet and legs... recovering from hip replacement surgery done September 20, 2023..

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I have used Alpha Lipoic Acid upon the recommendation of UT Dental School and it has been helpful. The dentist said to make certain that it is made in America.

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@cfreeman

Thank you I will check it out. Not sure what is causing the issues I'm having. Feels like not enough room in my mouth especially the top. Odd though I didnt seem to notice for 40 years. Also strange some teeth or part of some teeth feel sharp to my tongue and cheek. Hard to live this way as I keep thinking back to a few years ago when I was happy and enjoying life. My family is tired of it as so am I. I just keep hoping for a resolution. I'd even pull the 2 main teeth bothering me but no dentist will.

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Over the years I’ve learned that much of what’s happening with BMS is neuropathy. Nerve pain presents itself in a variety of ways. Sometimes I’ll feel like my tongue is too large for my mouth and it feels like I’m choking. Other times my gums all feel swollen. The pain on my tongue moves around constantly.

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@cfreeman

Did your teeth feel sharp to your tongue? Did it feel like there wasn't enough room in your mouth? How were you diagnosed? I've had mri's, scans on my mouth, bloodwork. You traveled to Costa Rica, wow!

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No, I didn't feel any of those symptoms.
I just kept getting sick with anything that was going around and xrays did not reveal anything.
I read a book by Dr. Robert Kulacz.. about "my teeth were killing me."
It resonated deeply, he did my first removal of jaw and old root canal.
Each one I felt better.
I finally had all my teeth removed, all at once implants, temp teeth, done in 1 day.
I had a one month vacay and all teeth costs for half the US cost... Vacay included.
Have u seen an allergist? Im an RN and it may be something that was used causing an allergic reaction... Sounds like that may be something to be ruled out.
Best of luck

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@cfreeman

Thank you I will check it out. Not sure what is causing the issues I'm having. Feels like not enough room in my mouth especially the top. Odd though I didnt seem to notice for 40 years. Also strange some teeth or part of some teeth feel sharp to my tongue and cheek. Hard to live this way as I keep thinking back to a few years ago when I was happy and enjoying life. My family is tired of it as so am I. I just keep hoping for a resolution. I'd even pull the 2 main teeth bothering me but no dentist will.

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Just read about your situation and wanted to respond. I have read about patients who suffer with dental pain, though no cause can be found. Even after painful teeth are extracted, the pain persists. I’m trying to recall the terms the piece used to describe it. I found it researching my condition of a taste disorder, that has since been diagnosed as post covid syndrome. (And, it occurred a few months after several dental procedures, wisdom tooth extraction and dental bone graft.)Still, I continue searching for help as my tongue disorder causes me constant distress with the taste disorder. Seeing an ENT. Gabapentin didn’t really bring me relief, but I am going to start another med soon. And, my therapist has recommended hypnosis. I am trying to set that up. People don’t get how mouth pain can be so very distressing.

I really hope you can find the solution. I’ll post if I can find the link.

Have you been evaluated by a Functional disorder doctor? Did any traumatic event precede the onset of pain?

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