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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@celia16

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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No traumatic event. A functional disorder doctor? Not heard of that. It's mainly the molars that are sharp and feels like not enough room in mouth. My teeth leave scallop marks. Dentists don't belive lack of room since I'm in my 40's.

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@cfreeman

No traumatic event. A functional disorder doctor? Not heard of that. It's mainly the molars that are sharp and feels like not enough room in mouth. My teeth leave scallop marks. Dentists don't belive lack of room since I'm in my 40's.

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I’m new to Functional disorders, so I’m not the best one to explain, but it can cover a large range of physical symptoms for which a cause is illusive. I’m searching for a doctor to see if that’s what I have. I also have distinct symptoms of neuropathy, though my neurologist says I don’t have it.

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@dannasims50 Posted:
I had starting writing about my problem and had to go back to something else and can’t find my message now. A year ago I had a root canal tooth pulled because it was hurting. After that I started having a burning sensation in my mouth which is still very painful. I have been back to the surgeon and put on medication, but to no avail. I have been to other dentist, specialist, Neurologist, pain management doctor. I am still having the burning in the lower part of my mouth where the tooth was pulled. Any suggestions please.

@dannasims50 I’m sorry you’re still having so much discomfort after your extraction over a year ago. It’s not very common but there can be a risk for nerve damage with any root canal or extraction. When this happens patients may have a feeling of numbness or tingling or in your case, a burning sensation. I’ve seen this happen with patients who have lower wisdom teeth extracted. Usually things return to normal within a few weeks.
This has to be so frustrating for you. There is an article that is relevant to what you’re experiencing. I’m just putting it here so that it’s available to you.

https://evidencebasedendodontics.springeropen.com/articles/10.1186/s41121-017-0013-2
What type of nerve testing have you received. Did you have a EMG nerve conduction study? Have you tried Gabapentin?

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I have also been to an ENT with no answers. I have been on medication and I use Lidocaine swish to numb my mouth, but it is only temporary. Some doctors believe that when the tooth was pulled that a nerve became hot, but they don’t know what to do about it. Most doctors and even dentist have never heard of burning mouth syndrome. The only relief is when I am asleep. It is so painful. I wish I could find someone who could help me and you too. I never had this problem until I had that tooth pulled.Frustrated in Texas

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@dannasims50

I have also been to an ENT with no answers. I have been on medication and I use Lidocaine swish to numb my mouth, but it is only temporary. Some doctors believe that when the tooth was pulled that a nerve became hot, but they don’t know what to do about it. Most doctors and even dentist have never heard of burning mouth syndrome. The only relief is when I am asleep. It is so painful. I wish I could find someone who could help me and you too. I never had this problem until I had that tooth pulled.Frustrated in Texas

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Oh gosh, that’s just an awful feeling. Nerves can be damaged. I have some residual peripheral neuropathy from my cancer treatments and I can certainly appreciate what you’re going through with the burning pain.

Burning mouth syndrome would be completely unrelated to that however. That is a real condition and it generally involves the mucosal tissue such as tongue, gums and cheek. It can be an autoimmune condition or even brought on but allergies to certain chemicals in tooth paste or foods. I’m not a dentist but I have 30+ years of experience as a dental assistant and we had seen patients with burning mouth syndrome. In fact, I also have that as a side effect from a medical condition.

So, I’m curious about your nerve pain. You mentioned that if you swish with lidocaine it takes the pain away for a little while. Topical lidocaine would only help with your pain in the tissue of your mouth. I don’t understand how it would take away the nerve pain associated with the extraction. You have me scratching my head! ☺️ By the way, I’m not a dentist but I have 30+ years of experience as a dental assistant
Can you tell me more about the pain? Is it constant? Does it get worse with different foods or ice? Is it down near where the root of the tooth would have been?

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@loribmt

Oh gosh, that’s just an awful feeling. Nerves can be damaged. I have some residual peripheral neuropathy from my cancer treatments and I can certainly appreciate what you’re going through with the burning pain.

Burning mouth syndrome would be completely unrelated to that however. That is a real condition and it generally involves the mucosal tissue such as tongue, gums and cheek. It can be an autoimmune condition or even brought on but allergies to certain chemicals in tooth paste or foods. I’m not a dentist but I have 30+ years of experience as a dental assistant and we had seen patients with burning mouth syndrome. In fact, I also have that as a side effect from a medical condition.

So, I’m curious about your nerve pain. You mentioned that if you swish with lidocaine it takes the pain away for a little while. Topical lidocaine would only help with your pain in the tissue of your mouth. I don’t understand how it would take away the nerve pain associated with the extraction. You have me scratching my head! ☺️ By the way, I’m not a dentist but I have 30+ years of experience as a dental assistant
Can you tell me more about the pain? Is it constant? Does it get worse with different foods or ice? Is it down near where the root of the tooth would have been?

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It is down behind my teeth where the tooth was extracted. It is really hard to explain. It basically starts burning when I eat anything. I stay away from spicy foods or foods that have a lot of seasonings on them. The only time it doesn’t hurt is when I am asleep. I have tried toothpaste without florid in them . I drink water and I eat ice chips, but it is still there. Sometimes it seems to get worse later in the day. I am just at my wits end. Thank you for trying to help me.

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@dannasims50

I have also been to an ENT with no answers. I have been on medication and I use Lidocaine swish to numb my mouth, but it is only temporary. Some doctors believe that when the tooth was pulled that a nerve became hot, but they don’t know what to do about it. Most doctors and even dentist have never heard of burning mouth syndrome. The only relief is when I am asleep. It is so painful. I wish I could find someone who could help me and you too. I never had this problem until I had that tooth pulled.Frustrated in Texas

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Try Xanax, 1mg to start. Worked for me been on 1/4 mg now for years .no side effects. Started in 2010. It won’t go away. I tried everything. Only thing that worked. Good luck.

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@bluebob

Try Xanax, 1mg to start. Worked for me been on 1/4 mg now for years .no side effects. Started in 2010. It won’t go away. I tried everything. Only thing that worked. Good luck.

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I have tried Xanax, but it didn’t work for me. I am on Clonazepam 0.5 mg twice a day. I have tried just about everything. My doctor is trying Amitriptyline at a real small dose at night. We shall see. It is very frustrating. Thank you for your reply.

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I developed chronic mouth pain post extensive dental work. I am now seeing positive results from Low Dose Naltrexone. It is used for all neuropathic pain. You will need to get it from a compounding pharmacy and it takes some time to start working. My doctor was hesitant to prescribe for me so I walked into the pharmacy and asked the pharmacist who is prescribing this and he gave me the name of a pain management physician. I quickly made an appointment and now have been on it for three weeks and see improvement. Good Luck to all that suffer from chronic pain.

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@dannasims50

I have tried Xanax, but it didn’t work for me. I am on Clonazepam 0.5 mg twice a day. I have tried just about everything. My doctor is trying Amitriptyline at a real small dose at night. We shall see. It is very frustrating. Thank you for your reply.

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Sorry, You might want to contact a doctor Nasim Fazel MD DDS . My last contact was UC Davis dermatology clinic.@916 734 6111. She has since moved to LA area I think but they should know her location.
She was very familiar with BMS. Had many patients.
She might be on the web. Good luck.

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