Teeth, gums, mouth - I don't know any more. Nobody seems to know. Maybe I'm describing it badly.
Years ago, way before any lupus diagnosis but probably while I was having symptoms and didn't realise, I started getting "sensitive teeth". I put it in " " because I don't know if that is what it is. It felt like sensitive teeth but, as the years have gone on (probably 15 or more by now) it has got worse and worse.
The pain starts off in one or two teeth - it might not, but that's how it feels. Then it spreads around the others and is so painful I can't talk, eat or drink and have to clutch around my face, pressing on my teeth and gums to make it feel less bad. It doesn't feel better, just less bad. The pain can sometimes (increasingly) feel like it's shooting up my nose, up to my ears, in my cheek bones, jaw hinges. The pain makes me cry and can last for anything from 10 minutes to a couple of hours.
What brings it on? I can take the dog for a walk, with or without my mouth covered to stop cold air rushing in, makes no difference, and I'm fine on the walk. But after about 5 or 10 minutes in the car on the way home, it starts. Lasts all the way home and for 10 - 30 mins once home.
Dinner time is scary. More often than not I can start eating without any problems but about a third of the way into my meal it starts and I can't eat anything again until it's subsided, by which time my food is cold.
More frequently now it is happening when I get up in the morning. I have my pills, a banana and a cup of tea. Either after the banana or the cup of tea it starts and I can't start/finish my cup of tea until it subsides. Again, by which time it's gone cold. This occasionally happens with hot drinks at other times but not all the time.
Sometimes it can just start out of the blue. It is driving me nuts. I have it at the moment, it's throbbing around my top teeth and the base of my nose and has been going on for about an hour and a half. I haven't even started my cup of tea, which will now be stone cold.
I have mentioned this every time I've seen the dentist for more years than I can remember. It's worse each time but all that ever happens is I'm told to try this toothpaste or that toothpaste. Every single time. None of them have made any difference. I've tried every sensitive toothpaste on the market and others that aren't and cost the earth. None of them work but still she says, try this one it's new. I'm in tearful agony and nothing is being done.
I have another appointment tomorrow because I've said I want a referral to the dental hospital and it's got to the stage where I'm scared of eating and drinking lots of things because of it. To be honest, it got that stage long ago but it is now totally unbearable.
I know there is some kind of long term coating that can be put onto your teeth (not the coating that wears off after a couple of weeks). It's hard like enamel. I had it put onto a sensitive tooth 21 years ago (by a different dentist) and there are still tiny remnants of it there. My dentist hasn't got a clue what this is and claims it doesn't exist. I know it does but the dentist who did it is no longer around for me to find out what it is.
I'm hoping (not in a sadistic way because I wouldn't wish this on anyone) that at least one of you might have had the same experience and can help me in my explanation. If I do get a referral (and I will stamp my feet and refuse to leave if I don't!) I need to be able to be clear.
Anyone?
Sorry this is such a long whinge but I'm at the end of my tether with it and want to try and explain so that you understand.
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Whippet_lady
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You sound like you’re suffering terribly which for me, as a retired (qualified) Dental Nurse, is frustrating as you’ve repeatedly told your Dentist about the problems you’re experiencing.
Yes, sensitivity can cause a lot of pain and sensitive toothpastes can help especially if you don’t rinse them out after brushing; Leaving a blob of the sensitive paste over/around/on the sensitive area can also help to ease it. As can using warm rather than cold water when brushing.
Sometimes gum recession can cause a lot of sensitivity, but can be easily remedied by putting a tiny, white filling over the dentine which has become exposed below the gum margin. As you rightly say a desensitiser can be applied by the dentist, but they would have to identify which is the troublesome tooth.
If periodontitis has been ruled out, dental x-rays, (assuming they’ve been done), don’t show anything untoward, your mouth upon examination by the Dentist is normal, healthy with no signs of oral cancer, oral lichen planus, sores or ulcers then it could well be Trigeminal Neuralgia &/or referred nerve pain. The trigeminal nerve splits into three main branches which transmit nerve impulses to different parts of a face.
Have a read up on Trigeminal Neuralgia - your symptoms may well correlate & tell your Dentist. The least they could do is rule it out…..
Tell your Dentist you’ve persevered, tried their suggestions but your symptoms are persistent and getting progressively worse. Ask them how they propose to treat you to help manage your ongoing, relentless, excruciating pain as they are the experts in mouths. (Anything to do with the mouth is always better being dealt with by a Dentist rather than a GP as they see inside mouths all day long!).
If the Dentist says they cannot find anything wrong then assertively ask for a referral to Oral Surgery. (I’m surprised your Dentist hasn’t already suggested this). Don’t be alarmed, Oral Surgeons deal with all sorts of dental problems, they don’t just perform surgery!
TMJ (Temporomandibular Joint) can also cause lots of facial & head pain as can sinus problems due to there being sinuses in cheek area & forehead.
I myself suffer with Trigeminal Neuralgia, TMJ, Oral Lichen Planus & have had 2 sinus operations - my teeth & gums are in first class condition though!
I've tried every sensitive toothpaste there is, including some very expensive, very well reviewed by dentists, new ones. I always use warm water to brush my teeth and never rinse. I've tried using the toothpaste as a cream on my teeth - it has to be all of them because, although some teeth are affected almost every time, the rest are affected at different times - this is what makes me think it's not a simple case of sensitivity. None of this makes any difference at all.
I've had a night splint for years on and off. This makes no difference to the pain either. If anything, when I wear it, it contributes to slight TMJ because I bite on it more and end up with a really annoying buzzing in one ear.
The pain doesn't happen immediately my teeth touch food/drink/cold air. It mainly happens with hot/warm food and drinks, not cold, but doesn't start until I'm 5 or 10 minutes into eating/drinking (which makes me try to eat and drink really quickly) but can also happen completely out of the blue for no apparent reason.
The pain isn't a short sharp pain. It lasts from 10 minutes to about an hour and a half, gradually making its way around, with the pain into my nose and ears and the throbbing occurring after about half an hour.
Honeybug says that there is sealant that can be applied to teeth enamel that helps protect their surface. Do you know of this? I know there is one that doesn't last very long but I know there is one that lasts for years. Do you know what it's called?
Sorry. Lots of questions but everything that has ever been suggested as to what the problem might be sounds promising then doesn't match my symptoms properly.
I'm at the dentist this morning and feel like I will either scream and shout at her for not understanding for so long or, more likely, just burst into tears.
The permanent sealant to protect teeth enamel is ‘Fissure Sealant’ which is usually applied to children’s 1st permanent molars when they erupt at approximately age 6. Further teeth (premolars & molars) are sealed as they erupt - it simply prevents food trapping in a tooth’s fissures which makes them easier to clean & prevent decay.
Your dentist should be able to discuss ‘desensitisers’ with you, as there are various products, as well as topical anaesthetics which tend to be used prior to having a local anaesthetic or during a Scale & Polish. Hopefully the dentist will take the time to explain this to you.
A ‘desensitiser’ is not a long term solution if dentine, (which is underneath tooth enamel & contains nerve endings which transmit pain), is revealed. The tooth below gum level is not covered in enamel so if there is any gum recession then the sensitive part of the tooth, ie the dentine will be exposed. A ‘pocket’ can form in the gum around the exposed dentine which can trap food, get infected and cause sensitivity. There are various options to remedy this particular problem.
Of course, this might not be what’s causing your sensitivity…..
Also if you have any fillings (white or amalgam) which are quite large/deep, then a ‘lining’ is usually put in prior to the actual filling. Sometimes, (over time), the lining breaks down and ceases to protect the nerve area of the tooth, this can cause extreme pain, but it can be easily rectified by removing the filling, replacing the lining & filling; The nerve can also be removed from the tooth.
Having every nerve removed is extremely drastic especially if a tooth is perfectly healthy!
Regarding your Bite Raising Appliance for TMJ problems, you may well need a new one made by the laboratory your dentist uses. This is because teeth are permanently moving, (albeit very slowly), and it is possibly not fitting you correctly therefore causing you to have a mal-alignment in the way you’re biting on it. To me your TMJ problem sounds like it’s a separate one to the other you’re experiencing.
A consultation with an Oral Surgeon could be the way forward for you.
If you are suffering with Trigeminal Neuralgia, then you really do have my empathy & sympathy as it really, really hurts! ….and when it’s raging it is unbearable! I’ve read recently that Lupus sufferers can be prone to it but I just can’t recall where I read this …..
Unfortunately, there is no quick fix. I take various analgesics (different strengths, some over the counter & some Prescription Only). When it’s raging, a find a hot water bottle a comfort…..
Various other medications, (eg muscle relaxants &/or nerve pain drugs), could be effective, but identifying the actual problem is the starting point.
Sorry it's taken a while to reply. There's been a lot going on and everything got a bit on top of me.
Thank you so much for all your help. I have made a long list of notes to take with me when I go to oral care. My dentist finally referred me to them. But I won't get referred to the dental hospital until oral care have gone through everything they can, so it could still be a while.
I told my dentist about the permanent sealant and she had no idea what I was talking about. I think she thinks I'm making it up because none of the other dentists or nurses have heard of it either! Good, eh?
Anyway, I'll see what oral care come up with whenever I get an appointment with them. I'm not expecting it to be within the next 6 months.
It’s so terrible that you’ve ended up feeling this way as a result of seeking expert help - you sound a bit brow beat 🤗
Is this ‘Oral Care’ at your Dental Practice, eg will you be seeing a Hygienist or Dental Therapist? (Sorry to be so nosey, I understand if you prefer not to answer x).
Here’s a link to the General Dental Council (GDC), you might find some helpful/useful information on there when you’re up to it ….
I’m soooo very sorry to hear how badly and long you’ve suffered from all of this.
I agree with Turquoise 1 on TMJ and Trigeminal Neuralgia.
Have you ever had a neck X-ray or CT/MRI scan done of your neck???
There are nerves that can get pinched in the neck that can cause nerve pain in the head.
There is a sealant that can be applied to teeth enamel that helps protect their surface.
It sounds like you have nerve issues with your whole mouth. Have you ever seen a Neurologist for this nerve pain you’re having?
There are rare conditions that can be found by Neurologists and other specialists.
Don’t give up sweetie. I searched for 64 years for my diagnosis and a star Rhuemetologist diagnosed me by a double DNA test. She prescribed meds that miraculously control/relieve my pain/symptoms from the rarest form of Inherited Erythromelalgia.
Again I’m so very sorry about your horrific plight and hope you get relief soon.
Hi, sorry I'm going to have to be quick because I need to get to the dentist.
Thank you for your reply and help.
You said "There is a sealant that can be applied to teeth enamel that helps protect their surface." Is this the temporary one you're talking about that only lasts a coupe of weeks or do you know of the more permanent one which I had on one tooth 20 odd years ago? If it's the more permanent one, do you know what it's called so that I can tell my dentist who doesn't know?
Apologies for delay…dealing with my brother dying and trying to arrange Memorial service and all the legal issues of no Will and his property and belongings.
No the sealant was a permanent one for permanent teeth. I’m sorry I don’t know the name of it nor can I find out because that happened almost 35 years ago.
How did your dentist appointment go? I hope some good news this time.
Hi Whippet_Lady, so sorry to hear of your troubles. Sounds like you are in a lot of pain! Dental and facial pain is just the worst. Turquoise-1 has given excellent advice, so there is not much I can add, except to say I suffer with chronic TMJ and some days the pain is awful. I understand, to some degree, what you are going through. Mine was triggered by eating an apple 4 years ago - the rest, as they say, is history!
The root cause of my problem is congenital defects in both TMJs, causing them to dislocate every time I open my mouth. The problem has been exacerbated by lupus, as MRIs show active inflammation. My problem can only be solved by surgery, unfortunately, so my current pain management strategies (self-physio, nighttime splint) are at best a stall. But they make it bearable until I can face the surgery - or can no longer face the pain. If you’ll forgive the pun.
The way we got to the root of my problem was when they ran a routine xray on my jaw, and found that my jaw was impossible to xray. That was their first clue. So they referred me to a maxillo facial surgeon, who ordered a ‘moving MRI’ which showed the dislocation. Plus the other problems, eg. deformed joints, corrosion, loss of bone marrow etc. That’s when we worked out what was really going on.
If your dentist can’t or won’t help, ask your GP for a specialist referral. Sometimes they can order the tests that we need. Godspeed - let us know how it turns out!
So sorry you are in so much pain. After having a sinus operation which widened the sinus channels I now do not have sensitive aches in my teeth but more importantly very few sinus infections which always led to a chest infection.
Hi. Sorry you are in such pain. I sometimes get pain which feels like it’s my teeth. Like you the pain goes to my ear and nose and even up to my eye. But my teeth are ok.
Before spending money getting your teeth coated it would be a good idea to be checked out for trigeminal neuralgia and TMJ. That’s what mine has been diagnosed as. Speak to your dentist again and ask if this is a possibility for your pain and can they refer you to someone to look into it. If they won’t help then go to your GP.
Coating your teeth will not help if these conditions are the cause of your pain so that’s why I think you need to get a diagnosis first. The fact that no toothpaste helps and nothing in particular sets off the pain would suggest that it is not your teeth which are responsible for the pain even though that’s where it appears the pain comes from.
I hope you find something to help you soon, the pain is awful when it happens x
Hello… Apologies for tardy response. Only look on here sporadically due to only having GP ‘diagnosis’. Long story, but lifelong history of pain and ‘firm’ diagnosis of hypothyroid condition, which means I usually go to TUK section. This facial/ dental pain: it’s agony and distressing. I’ve had it since childhood - now 70. This is not intended as ‘advice’, as a very personal ‘solution’ discovered more by accident during 2020-21. Have always had worse pain and debilitating symptoms after dental visits. Also have severe tinnitus and ‘Menière’s Syndrome’, treated by SERC, and this medication seemed to reduce the number of episodes. Since ‘lockdown’ and its consequences, I couldn’t get to the dentist. Started taking a reputable brand of Vitamin D3, beginning at 1000 I.u every night - my GP had tested blood levels and they were very low. I increased after retesting showed still low in range, and am now on 3200 I.u. This has had a surprising effect upon my teeth - they are strong, glossy, and there is now no more evidence of ‘chalkiness’. Have been told many times by dentists that I’m a ‘nocturnal tooth-grinder’ (slap on wrist😳) and was supposed to have a gum shield at one point. My front teeth were crumbling, and I could work out how I could manage to grind those! Also, my receding gums are vastly improved…there is no sensitivity when I drink or eat. Occasionally I still get a ‘face pain’ as I started to describe it so others understood! But it is increasingly rare. Like you, I’ve felt so desperate in the past that I would be crying in bed, just praying it would stop. I really hope this is helpful. Bless you…
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