Temporomandibular joint problems

Hello everyone,
I’m reaching out because my wife, has been suffering from severe Burning Mouth Syndrome (BMS) for the past four years, ever since an ill‑fated dental procedure triggered the onset of her symptoms. Her condition has become life‑altering, and despite extensive medical consultations, we still have no clear diagnosis or effective treatment.
Over these years, she has seen:
- Dentists and oral medicine specialists
- ENT doctors
- Neurologists
- TMJ specialists
- Pain management consultants
She has undergone several MRI scans, but none have identified the specific nerve or structural cause behind her pain. Some specialists suspected TMJ dysfunction, while others considered trigeminal nerve involvement, but nothing has been confirmed.
Her symptoms include:
- Constant burning sensation in the mouth and tongue
- Intense flare‑ups that make eating and speaking extremely difficult
- No visible abnormalities on examination
- Severe insomnia, often sleeping only a few hours or not at all
- Emotional exhaustion from years of unrelenting pain
At the beginning of her illness, she was prescribed several commonly used neuropathic pain medications — including gabapentin, amitriptyline, clonazepam, and similar treatments. Unfortunately, she experienced severe adverse side effects with each of them and was unable to continue. This has made her treatment journey even more challenging, as many standard options are not tolerable for her.
After four years and consultations with nearly every relevant specialist, we feel she has exhausted conventional medical pathways, and we are now trying to learn from others who have lived with BMS or nerve‑related oral pain.
I would be very grateful to hear from anyone who has dealt with similar symptoms, especially regarding:
- Treatments or medications that helped (even partially)
- Approaches that did not help
- Experiences with TMJ‑related burning or trigeminal nerve pain
- Options for people who cannot tolerate neuropathic medications
- UK specialists who were particularly knowledgeable or compassionate
- Options for surgery Since the nerve that is causing the problem could not be identified in the scans and MRI done, Would this work, or anyone who may have similar nerve blocking procedure please let us know how it worked out.
- How you manage the emotional and psychological impact of chronic burning pain and insomnia
My wife is suffering so much, and we are doing everything we can to support her. Hearing from people who truly understand this condition would mean a great deal to us.
Thank you to anyone willing to share their experience or advice.
Warm regards,

I started with tmj a few years ago. When walking the dog I was having strange nervy pains in my scalp it seemed,also some pain in my neck when reversing out of the drive. Later i began to have a clicky jaw and pain when biting something hard. When a physio couldn't help I mentioned it to my dentist who I later found out is also a licensed acupuncturist and diagnosed tmj immediately. After several sessions the pain in my head cleared and the fullness around my ear and clicking also got better. He also made me a mouth guard to wear in bed which I no longer feel i need and for some while I stopped eating foods such as baguettes you need to tear with your teeth. My bite has also changed now which apparently can happen when it all clears up. The acupuncture sessions lasted for about 45 minutes each, I'm so pleased they sorted me out.

About 10 years ago I suffered from TMJ after several years of a clicky jaw. I could hardly open my mouth. Could only eat teaspoonfuls of soft food. Could hardly brush my teeth. Dentist gave me a sheet of exercises and also made me a silicone mouth guard to wear at night to stop me grinding my teeth caused by stress and anxiety in my life.

It gradually got better. Don't chew gum, don't yawn widely or sing with mouth wide open, . Just treat your mouth with great care. Don't eat hard food like crunchy apples or toast. I stew apples and grate carrots. It will get better with time and care.

No - I wasn't on antibiotics at that time (I don't think I have ever been on antibiotics) My heel snapped at the start of covid and I could only get a telephone appt with the doctor who prescribed painkillers and said it was tendinitos. It was October before I got a hosp apt as covid has eased up a bit and it was the end of the following year before I could be operated on.

Grayling1

Thanks so much ladies for the information. This has come on me after two years of contracting many different health problem. Hit 70 and I didn't just go down hill I went right over the cliff!! Firstly my achilies heel fractured and required surgery and this left me with toes stuck like a bunch of bananas, muscle wastage which has left me with quite a limp. Ater that it was a mastectomy and therapy. I often felt pain and put it down ro all the medication I was taking. I did mention it to my doctor but he just side lined it and went on with something else but I went back to the dentist and she referred me to our local hospital and an x-ray revealed TJP. She gave different ways on how it affects in different ways, Given the problems I have been having with my health and mobility I think although I have never really felt stressed I feel that may well be the cause. Will see my own doctor again and discuss it with him. Sorry for going on about all this but I appreciate all the information you have given me.

You say your achilles fractured, were you on any antibiotics at that time ?I only ask because Ciprofloxacin and any that end 'Floxacin' can be the cause of achilles fracture.

Grandma70s: have just read your post. Think I may be on the right road.

Thanks so much ladies for the information. This has come on me after two years of contracting many different health problem. Hit 70 and I didn't just go down hill I went right over the cliff!! Firstly my achilies heel fractured and required surgery and this left me with toes stuck like a bunch of bananas, muscle wastage which has left me with quite a limp. Ater that it was a mastectomy and therapy. I often felt pain and put it down ro all the medication I was taking. I did mention it to my doctor but he just side lined it and went on with something else but I went back to the dentist and she referred me to our local hospital and an x-ray revealed TJP. She gave different ways on how it affects in different ways, Given the problems I have been having with my health and mobility I think although I have never really felt stressed I feel that may well be the cause. Will see my own doctor again and discuss it with him. Sorry for going on about all this but I appreciate all the information you have given me.

I suffered from it many years ago. I remember that it was very difficult to eat for a while. It was particularly bad just before my younger son’s wedding, so I wonder if stress can have something to do with it.

It went away of its own accord, but I am still nervous about it returning. Can’t remember how long it lasted, but quite a time..

I clicked my jaw out of place years ago chewing gum to stop me smoking. Ended up seeing a consultant who I think gave me some exercises ( probably the one Luckygirl mentioned; it’s amazing how effectives exercises that seem to simple can be) and told me to rub Voltarol in that area. It did clear up but my jaw aches terribly after dental appointments.

My DD had Botox injection from specialist orthodontist for this. It seemed to work

I was diagnosed with TMJ disorder decades ago but it doesn’t cause me any pain now. 🤞🏻 it doesn’t return like Esmay. I have needed quite a lot of dental work though because my bite is off.

I had TMJ trouble as a teenager.
The dentist couldn't find anything wrong .
I ended up at a London dental hospital.
It can be caused by an unfortunate yawn and sometimes by bruxism.
The sedatives that I took for IBS seemed to calm it down .
Now after years of not having it -yawning can give me some pain .
I find warmth and analgesia fixes it until the next yawn !

I think this is the problem I had but not too badly. Discussed with dentist. Move on a bit I had open heart surgery a year ago for dissected aorta. Following recovery which took a while I noticed I was standing a bit more upright Low and behold no more problems with jaw. Set me thinking would exercise to straighten back help with jaw. Who knows, mentioned it to dentist who smiled positively and said maybe. Hope you manage to get some relief

Thank you Luckygirl, Was ex-rayed yesterday and given a full explanation which was great as doctor and dentist gave me no information on it. You are right - it is jolly painful!!

I have had this - it is jolly painful. Some little tricks:

Tongue in roof of mouth and gently open and close mouth slowly.
Gently rub in front of ear in the space that is there when you open your jaw.

I find these help - good luck.