How do you address a continual complaint of pain when numerous doctor and hospital visits say nothing is wrong?

How widely did the dentist x-ray, did s/he look beyond the actual teeth and root? Was this an upper tooth, could it be sinus pain? Perhaps you need a referral to an ENT specialist who can look beyond the mouth for a cause.

(edit)I've been doing a little bit of reading on line - it is possible that a problem with the root canal may not be obvious in an x-ray, if the pain is intractable I'd be inclined to look into redoing the root canal or even consider an extraction.

Christmas nearly three years ago the pain is so bad she puts up with an ER visit of six hours.

Two weeks ago, it's bad enough to get herself taken to the ER and admitted for observation.

And in between? Did it settle down? If it "grumbles" without flaring up so badly, does anything help to relieve the pain?

What does strike me is that the dentist and doctor aren't saying there's nothing wrong, they're saying they can't find it. And it wouldn't be so unusual for a troublesome nerve to be very, very difficult to get to grips with. I certainly think you should try to hide (even if you can't quite drop) your suspicion that she's making this up for attention.

What is her main doctor suggesting now as a treatment strategy?

My husband (no dementia) complained about molar tooth ache for quite a while, and the dentist said he needed a root canal, so he did it. The pain didn’t go away completely and still would flair up occasionally. They performed a 2nd root canal on the same tooth. Same result. Intermittent flair ups, but the X-rays still didn’t show any problems. This issue had gone for a couple of years. So they decided to pull it and do an implant. When the dentist pulled it DH heard a loud whooshing noise, and the dentist and tech said “wow!” And actually called another tech into the room to witness this mess. Huge abscess under the tooth that never showed up on any X-ray. He decided to forget about the implant. I would suggest just pulling your moms tooth.

I think rocketjcat and cwillie have a good point, to extract the tooth.
You don't say how old mom is but it sounds as if she has had D/A for a while. It may be best to be without the tooth. I am mid-age and don't have dementia, but I had a root canal several years ago and I can tell you that I have had "flair-ups" where the tooth is sensitive bordering painful--then returns to normal. It seems that D/A symptoms can include hyper-sensitivity, so these combined sensitivities may be the problem. If your mom can live without the tooth, you may consider that alternative. Just be sure the extraction is done by an oral surgeon. However, she may then miss the tooth.... Good luck with whatever you decide. So difficult to know the "right" thing to do.

I agree, have the tooth pulled. I have a root canal right next to my sinus cavity. So I can have slight pain at times. I also had an infection that didn't show on an Xray.

I'm currently having a problem with a root canal tooth and the dentist didn't find any reason for it. Was painful, has downgraded to uncomfortable and annoying. But if I had been having pain with a tooth for as long as your mother has I would be having it removed. Perhaps a simple solution to ongoing misery. I think it would be worth doing. I wish you both the best.

Thank you everyone, your suggestion of having the tooth pulled was all I could think of as well. I didn't know that the x-ray could miss possible infection still. My mom will be 82 in February so the extraction is probably best, she won't remember what happened so that could be good.

Not possible to know if she is exaggerating or not, or attention seeking. Can you observe her when she is alone and does not know you are watching.

Is there an immediate reaction when someone comes into the room. Does she look as though she is in pain? Is she touching the area or screwing up her face, or very restless. Is she able to sleep. What happens when she eats?

I had the same experience with a tiny abscess under a tooth. Nothing showed up so nothing could be done. Finally another dentist did a root canal and sure enough there was pus. That all cleared up but for years I could press on my face over the area and it was still sore.

Have they done blood tests to see if she shows signs of infection.

An extraction is a good idea but if she needs anesthetic that is another risk.

I think I would ask the Dr if a course of a suitable antibiotic would help. That's always a good idea prior to what could be the extraction of an infected tooth.

Agree any extraction must be done by an oral surgeon. It is a simple matter but carries great risks. Also in a facility that has fully trained staff and life saving equipment, that is assuming she is not a DNA.

Is she getting adequate pain relief medication. A couple of Tylenol won't touch that kind of pain.

Take your time and observe her carefully before making any decisions.

My mom has end-stage Alzheimer's, but she also has rheumatoid arthritis. I keep her moving and walk her daily which seems the best "medicine" for her. Since pain medication will impair balance even more, administration of narcotics will increase the likelihood of falling considerably. I have been using a tablespoon of liquid CERTO with a cup of grape juice daily and that seems to work very well for pain because she seems to be moving a lot better. Of course I use thickener with it since her Alzheimer's has caused some dysphagia. I drink it little myself and it has really helped me a lot since I too have chronic pain issues.

Make sure she has adequate ORAL care--doctors never look at the teeth..and tooth pain is an all too common source of discomfort. I supervise my mom brushing her teeth and she can still use a water-pick which has helped prevent gum disease..and I still take her to her dentist every 6 months. If she is diabetic like mine they are the most prone to gum disease.

Wjared99, please come back in a few days to let us know how things are going, I hope the antibiotics help!

Root canal doesn't mean the tooth was extracted. If the tooth is still in her mouth, the root can be cracked and yes - this can cause extreme pain.

I had an abscess and root canal was done. One year later I was back at the specialist who couldn't understand a new abscess on the same tooth. It was decided to extract the tooth and they discovered the root had cracked. This will NOT show up on an X-Ray, not even the circular kind that the specialist uses. Needless to say, the specialist was horrified and felt terrible that I was again in so much pain. He apologized profusely and explained how a cracked root doesn't necessarily show up on an X-Ray.

Tooth pain is totally debilitating and she might need an extraction. I had no more pain after the extraction, other than to my wallet, lol.

I'll just mention I had a root canal 30 years ago that hurt every day worse than before I got the procedure. It got excruciating until I had it extracted last year. The oral surgeon said the original dentist damaged the nerve.

I had a root canal in the 1980s that hurt sporadically for decades. Finally determined with improvement of imaging techniques that the tooth had an extra root that was difficult to see. Second root canal, finally no pain. Take her to a different dentist with state-of-the-art imaging equipment (an endodontist, perhaps) and have them look. Other possibility is that they went through the tip of a root and there is inflammation or infection.

Try some CDB oil. It goes under the tounge and may help.

M&M’s. Placibos

Look up TMJ and see what you think.

My mom also has Alzheimer’s and complains of pain where nothing is wrong. Knowing my mom, I know it’s just her wanting me to give her attention and coo over her. Also she has gone thru some stages such as ketchup and other foods being too hot burning her mouth she puts on quite the drama. That lasted a couple months now she eats the same things with no complaint. I guess you just have to know your mom to figure it out but if all these different drs say nothing is wrong then I would believe them. Just try to downplay or ignore her complaints and see if she stops complaining.

I can sympathize with your story; it’s not entirely unlike mine. My mother, with dementia, had a knee replaced a few years back and hasn’t stopped complaining about the pain.
In my mother’s case I am quite sure that there is no pain. It took 50 years to put the pieces together, but I am 100% certain that my mother has narcissistic personality disorder. She presents herself as a covert example. Fortunately for me this complicated mess is in the capable hands of a nursing staff 2000 miles away. Overseeing her health is all I can handle.
I am hopeful that this is not your situation, but if she’s controlling and uses people it may be worth further reading. I wish you and your mother much luck with this mystery.

Get together with GP NOW!! YES dementia and Alzheimer's are like someone who has a limb removed but have ghost pain. It's not there but they still feel it. My Mom's pain are her back molar AND her stomach. She does need a root canal BUT she cannot be placed under to get it done. I found out yesterday as my husband has non-insuline diabetes and has been complaining about stomach problems which Dr thought could be gall bladder. NOPE, they scoped his stomach and his stomach in not ridding the food as it should. Yesterday they found his stomach FULL OF THE FOOD HE ATE THE NIGHT BEFORE AT A BANK OFFICER'S DINNER! That was at 6:00-8:00pm! We found that this is an issue that diabetics have no matter the stage of diabetes. It makes them feel hungry hours later even though they have eaten and all that food is still in the stomach! He now needs to see a gastroenterologist. My Mother who is insulin dependent has had this stomach issue for years and everyone was feeding her which then caused other issues. She is on a very stringent diet in the assisted living group home. No stomach issues now.
If he has dementia or Alzheimer's, you are allowed to lie. If he doesn't remember, tell him he saw the Dr yesterday or day before. That he can't go back until next month. Give him an ice bag to hold against his cheek, that the dentist told you to do this if the pain comes back. Get Dr to give RX for placebos for the pain...remember it's all in his head. Treat him like it's real.

How about trying a single 350mg Tylenol once per day but tell her it is an Rx from the dentist. First, at her age and other related issues one tylenol/day should not be harmful (in my very unprofessional opinion), and secondly, placebo effects are very real in many cases. And as a final thought, if there is some real pain wouldn’t a single tylenol be better than ignoring it?
I care for my wife with advanced ALZ and I wouldn’t hesitate to at least try this approach.

Phantom pain is a sensation created in the brain and related to a traumatic memory. You might look at some Youtubes demonstrating EFT (emotional freedom techniques) or commonly called Tapping.
Its safe and harmless and you can learn to do it yourself. Often works when nothing else does.
It is a great stress therapy for you also.

Reports of pain can be an attention-seeking, attention-getting technique - similar to what preschoolers do when they want attention from parents. Pain is difficult to dispute, because outsiders cannot "see" the pain.

I once had a patient of 50-ish, whose 91-year-old mother constantly complained of pain - to the extent where the daughter demanded that the mother be placed on hospice care so that a morphine drip could be started to ease her pain and stop her complaining! The daughter said that the mother was driving her crazy complaining of pain all day long.

But the issue was that the mother was not terminal - she was only very old with the normal chronic aches & pains of an aging body.

So, it's possible that it could be an attention-getting technique.

She may actually be having pain or imaginary pain - to see if it is imaginary tell her some story about the dentist reassessing her situation and he found something so he has prescribed a pill that has to be taken 2 or 3 times a day & add that it has to be done just right [lay it on thick] with/without food [the easiest time for the staff to give it to her] then find some placibo type pill for her to take for so many days - if pain comes back after the pills are finished then leave her on them - try to get one that has a distinct look so she see it when she takes it & notices every time

If her pain disappears then it is phantom pain if it doesn't then she is truly in pain but you will have more information about the situation because of this try than before

After several years of testing for physical causes of the pain (legs, arms, back, headaches, etc) all the specialists concluded without identifying physical causes it was fibromyalgia like related to the nervous system. My wife has the pain (very real to her) and we have tried about every thing but probably the most comforting so far are massages along with a placebo. Unfortunately there is little help for the dementia /Alzheimer’s sufferers which adds to the stress of the care givers (in my case my wife of 44 years). Even our gp of many years was being very truthful when he suggested we might try marijuana ( unfortunately we lived in a state where that was not possible but are now living foreign and am considering that approach although my wife has never smoked might have to try brownies, etc.) you might think about new treatments in states that niw allow medicinal marijuana

My dad, while not having dementia, had severe facial pain. He was diagnosed with trigeminal neuralgia and had to undergo nerve blocks. He had this pain for a couple of years and, ironically, it went away when they got his high blood pressure under control. This is a very real pain and difficult to treat. She would need to see a neurologist and then neurosurgeon.

Wish I had answer for you but can only tell a similar story. Husband was 88 with Parkinsons and Alzheimers and woke complaining of unbearable pain. He described to me, the paramedics and hospital doctors that it felt as though a nail were being hammered into his ear. He did this with appropriate grimaces, moans and groans and anyone would have thought this poor many was in agony. They could find nothing wrong with him. He never had anything like this before or since. I asked Dr.s if one of his conditions could cause him to perceive pain that is not actually being generated. They said they do not know.

CLOVE ESSENTIAL OIL

I can tell you my experience, I had a root canal when I was around 30, I’m 58 now. I am still having pain with it to this day. My pain doctor thinks it’s a nerve in the jaw that gets aggravated when the root canal is performed. He’s had other cases too! Something to think about.

Search for "trigeminal neuralgia" (not sure of spelling) to see if the description might explain the pain. Trigeminal neuralgia is often missed because the pain is described by the patient as tooth pain when in fact it is actually pain in the jaw area near the teeth. My mother (NOT a dementia or alzheimer patient) was treated with Lyrica to control the pain. Lyrica does have some side effects.

What you are describing is a huge quality of life issue. Regardless of the underlying cause, your mom's perception of discomfort is causing her to suffer. That is the starting point for any care plan. The object is to reduce suffering, because it diminishes quality of life and can reduce quantity as well.

If the caregivers are having trouble identifying what to do, because they cannot identify the source of the discomfort, it might be useful to weigh out risk/benefit of various options as you work to find a solution.
For example, if it seems reasonable to guesstimate that the tooth extraction is a likely root cause, is it likely that any pain rt to this is neuropathic? If that is a reasonable conjecture, what are the risks/benefits of various approaches to controlling neuropathic pain?
Clove oil is helpful for superficial nerve endings on the gums. Systemic nerves generally need systemic meds. It is also possible,that a routine anti inflammatory may help, or, acupuncture . which things to try are about relative risk and likely benefit.
See if her dentist has a "most likely" hypothesis. Then brain storm from there.