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.

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@ladybug4joints

Can someone check to see if you have Candida in your mouth, especially if you have been on antibiotics ??

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Thank you. Yes I've been checked for that. I have not been on antibiotics in years. Also they checked autoimmune, vitamin deficiency, a bunch of bloodwork and all was good. Not sure how teeth can irritate a tongue and cheek like this.

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Try Xanax,1mg to start then taper of as needed. Had BMS for 12 years its been under control for last 10 years. Don’t let them talk you out of it just because its controlled. It works. I tried a dozen things first, it’s the only thing that worked. Good luck.

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@cfreeman

I am still searching for answers. My tongue is still in pain from teeth on the right side. A dentist has tried helping by crowning the top back molar, angling it at a slant, but it still hurts my tongue and feels sharp to tongue and cheek. This is the second crown he's tried (zirconia) so I've spent 3,000 and my mouth is in pain. The bottom back tooth is sharp on the tongue side. I had a brain mri and nothing showed. Just had a neck mri without contrast. It was the same as a year ago when I was having these issues. I have no nerve compression. I have congenital join c2 and c3. Some bulging discs at c3 and c4 and c4 and c5. And an arthritic joint at c3 the left side. Nothing that is explaining the mouth stuff. I have other symptoms but some I've had years, just worse like ears ringing fairly loudly. I haven't been able to do things I did 2 years ago. Nothing explains it. It's taken over my life, day and night. Very hard on my family as it's all I cam talk about due to pain. I have been to many dentists, ENT, neurology, general family doctor. I've tried getting I. To Mayo but they deny me. Not sure if I'm choosing the wrong department or my case is not severe enough. Maybe someone has a suggestion. I live in ND. I'm going to try the university of Minnesota dentistry. I am not sure where to turn. I can barely concentrate at work and I love my job so want a resolution so much.

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Not sure if I replied to the right person cfreeman, so I will repeat. Try Xanax, worked for me, had BMS for 12 years . This is the only thing that worked. Good luck.

I started with 1mg now stay on 1/4 mg per day and its 95% controlled.

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Candida wouldn't cause what appears to be, nerve pain. And most people would have Candida of some form in their mouths, as it's ubiquitous in our environment.

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@linamend

Candida wouldn't cause what appears to be, nerve pain. And most people would have Candida of some form in their mouths, as it's ubiquitous in our environment.

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True. I have had a crown placed on the top back tooth and the dentist put it at a slant to take pressure off my tongue but the cusps feel sharp or too hard, maybe the shape, and the slant part sits on my tongue . It also irritates my cheek but no marks. I'm in a lot of pain. This is the second crown and I don't think he will do anything to fix it. He's also frustrated with not getting adequate results.

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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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@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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Interesting. Mine first started with sore tongue in the left side then some sores. However the worse came after back surgery but maybe a coincidence since it sorta started prior. 4 years is too long. I thought my 2 years was long. Not looking hopful

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I have had six plus years of pain very similar to yours. It was caused by an endodontic procedure that damaged part of my trigeminal nerve. I have been to 4 neurologists and 2 neurosugeons and taken a cornucopia of gabapentin, clonopin, Lyrica, Cymbalta, etc. I am now taking Vitamin B12 shots weekly and that seems to help.

May l suggest that you reach out to the Facial Pain Association. It is a wonderful organization dedicated to those of us who suffer with chronic facial pain.
No one can ever get used to this excruciating nerve pain but if there is any saving grace in this the pain sometimes goes away for a bit. It also has a circadian rhythm to it which I'm sure you have noticed by now. I am so truly sorry that you have had to endure this pain.

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@gracie71

I have had six plus years of pain very similar to yours. It was caused by an endodontic procedure that damaged part of my trigeminal nerve. I have been to 4 neurologists and 2 neurosugeons and taken a cornucopia of gabapentin, clonopin, Lyrica, Cymbalta, etc. I am now taking Vitamin B12 shots weekly and that seems to help.

May l suggest that you reach out to the Facial Pain Association. It is a wonderful organization dedicated to those of us who suffer with chronic facial pain.
No one can ever get used to this excruciating nerve pain but if there is any saving grace in this the pain sometimes goes away for a bit. It also has a circadian rhythm to it which I'm sure you have noticed by now. I am so truly sorry that you have had to endure this pain.

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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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@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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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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