My teeth hurt!!!

Has anyone else experienced terrible pain in their mouth........, the sort of pain where you can't determine which tooth is hurting, because they all are? I recently experienced such pain that it woke me out of my sleep! The pain was to the upper right of my jaw and all it's associated teeth. The roof of the right side of my mouth was terribly swollen too, affecting my speech. Eventually, all those teeth seem to have caved inwards a little, or is it my imagination/age?
HELP!! Is it Sarcs?

Report post

23 replies. Join the discussion

Are you on steroids? I WAS on 40 mg. I woke up with a terrible toothache. But my face, even my lips were hurting!! The next day I had no pain. So, I attributed it to Sarcoids. Then the following day I felt pain just on one tooth. Went to the dentist and was told I needed a root canal. Had that done, then my tooth fell apart before the dentist had time to cap it. Now I'm feeling "weirdness" in two other teeth. I take good care of my teeth, floss every day. I'm beginning to think it was the steriods that weakened my teeth. I told my doctor I was done with the steroids. I hated what they were doing to my body. And after my second cat scan it showed absolutely no improvement. I can't say for sure, but my thought was "its the steroids"!! And my teeth are falling out!! LOL!!! I'll be back to see my dentist in a week. Hopefully he can give me some answers. I'll keep you posted.

Paula

Report post

I have lost 2 teeth now because they became loose and my body started absorbing them from the roots up - no decay just the white blood cells decided they were alien and isn't this what happens to our organs with sarcoidosis.
My general doctor just shakes his head and tells me to take prednisolone and my dentist tells me that they just don't know what causes it but it is probably because I am not producing enough saliva. So I am trying to drink more water, I chew gum and use a very high fluoride content toothpaste.

Not to be a downer but I do think the sarcoid which is already in my eyes and sinuses is to blame and maybe it could be your sarcoidosis causing it and not the prednisolone.

Report post

I had 2 root canals, that were found to be unnecessary because the pain was later attributed to trigeminal neuralgia. The next round of mystery tooth pain-ear pain was blamed on the nerves in the TMJ joint becoming inflamed. Told to wear a night guard and avoid hard, chewy food to rest it, ice packs and nsaids.

Report post

My teeth are terribly cold-sensitive- like nerve pain.... I wonder if it's the Prednisone but I am not sure. I plan to see my dentist as well.

Report post

Well I'm not on any steroids, in fact I am adamant that I will not take anything that is not guaranteed to work!
But after reading the responses to my question, I think it is Sarcs absorbing everything from the root up or TMJ. That's ok, and manageable.
Isn't this disease fun!!! It brings people together, to laugh, cry, and wonder. It's like a good movie, except we're in it!
God bless, and stay beautiful!

Report post

not on steroids, but have been having trouble with teeth for a couple of years, literally having pieces just chipping and falling off, and fillings or caps at dentist fall off quite quickly once within 3 hours of leaving dentist. I know you can have dental sarcoid, but in uk it's difficult to see the right doctor, as nobody is a particular sarc expert and you end up under care of the doc that specialises in wherever you were first diagnosed, so i get a respiratory consultant despite having more symptoms everywhere else, does anybody know of any dedicated sarc specialists in england/wales, even clinical trials would be worth a go

Report post

I remember reading somewhere that Sarcoid patients commonly have problems with sinusitis...They are learning more about it all the time. Interestingly, I have woken (is that a word?) up many a morning with what I call "sinus headaches" and have had to take something that will relieve the pressure and pain. I usually take "Tylenol Severe Sinus Congestion". It will sometimes work immediately. Or other times I have taken several straight narcodics for the pain (I use Fioricet) with no relief, wait a bit, and take 2 "Tylenol Sinus" and I will get relief, thus making me think it is the pressure in my head. Also "Zycam Intense Sinus Relief" will sometimes work. Now, I have suffered with Migraines since I was 16 and know the pressure headache can be just as bad, almost. But narcodics won't work for that kind of headache alone. So, back to my theory on Barometric Pressure......I know when the pressure is dropping outside or we are about to get a front move in to the area....including hurricaines...I get debilitating headaches. I remember Hurricaine Jeanne or it might have been Wilma, not sure, my head felt like it was in a vice and while I sent my family into the safe room, a closet, per the radio weather man's advice at that time during the hurricaine, I laid in bed not caring if the house blew apart. I was in that much pain. And it didn't let up the whole night until the hurricaine was well gone. Now that I think of it, it must have been "Wilma" in 2005 because it had one of the lowest barometric pressures recorded in the Northern Hemisphere, more than " Hurricaine Katrina." It did cause more damage to my home that Hurricaine's "Jeanne" and "Frances".
When I get a headache now, to determine which kind it is, I either turn on the weather channel to see if the barometer is falling or I know it's pressure probably because I woke up with it. I think it has to do with lying flat at night, the body being horizontal maybe. If it's not too bad I will walk around a bit and see if it eases up. Sometimes just going vertical, getting a shower, etc. will make it go away.
So......when the teeth hurt, (I used to be in the Dental Field) sometimes it is in actuality the sinuses. I had many a patient come in and swear they had a toothache and after taking panoramic x-rays it turned out to be the sinuses. The person could be in extreme pain. And in our cases, with Sarcoiosis, it could be inflammation and not necessarily infection. Of course, you will be put on antibiotics....be careful! You may not need that ......Just steroids or NSAIDS. But I am not a Dr., just known what I have seen over the years with the teeth.
It is interesting about sinusitis though. Maybe that is what's really going on with you.....But it sounds common in us Sarcies. Hope this helps!
By the way, if anyone knows where that info. is on Sinusitis in Sarcoid Patients is, please let me know.....I wish I had saved it to show my Dr.....Thanks.

Report post

Wow,

I have bouts of loose teeth, and never attributed it to my sarc. I have never had a filling, braces or anything, my teeth are perfect. Maybe the sarc is why. My sarc is in my lymph nodes and back.
S

Report post

Have had everything from spontaneous fractures to failed crowns and root canals which is all worse since diagnosis. Several experts have suggested that sarco depletes calcium and messes with vitamin d, so it stands to reason that it would pull calcium from bones and teeth. I use a flouride rinse twice daily, and have a flouride tx at the dentist every six months. It only costs $20 and is well worth it!

Report post

I had been bothered with tooth ache and just general soreness around my gums. I had one tooth xrayed three times. They could find nothing wrong with it. Then I started developing sores on my mouth and lips kind of like cold sores. My dr. increased the amount of folic acid I take for the side effects of the methx and I haven't had a tooth ache for at least six months. I don't know if the folic acid corrected it or my teeth just quit aching on their own. There are so many unexplained occurances with this ilness that I don't want to say for sure what helped me but that is what happened to me.

Report post

Incredible. I've had upper left vague, intermittent tooth and jaw pain for months, but didn't put it down to sarc until reading all the above. I've had sarc since 2001, have it in my lymph nodes, mediastynal area, liver, lungs, throat (paralysed right vocal cord) and brain.... and now it seems as if it is affecting my left jaw/teeth. Sometimes it can 'freeze' my jaw up, so talking is difficult, kind of stiff.

My dentist can't find anything wrong but replaced an old filling in one of my molars in case it had a hairline crack. Nothing changed.

I don't take prednisone, so I guess that means its either inflammation (sinuses or jaw/gums) or a calcium draw problem.
I'll talk to my neuro specialist about it next month and will relay his responses here.
Take care.

Report post

Hi, also from the Uk but just find this site so helpful and not that ours is not of course. I am in exactly the same position as you have a consultant dealing with my lungs I have COPD as well but thats were it ends, so maybe we should try and find a research programme that we can get onto? were in the UK do you live? I am in Devon but will go anywere to get so answers as for teeth mine are aching, swollem mouth, ulcers, clears up for a while then back again, think it is down to lack of Vit B12 due to all the steroids and anitbiotics, look forward to hearing from you, have a good day.

Report post

I have lost most of my teeth to something.
Oh yeah, they were pulled out by the good
dr.'s I. Pullum and U. Yankum. Referred by my
good friends Tres Studges.

Down to 6 in front and 7 on bottom. All in front.
Still eat fairly well. Learning to love soft food.
I blame it on sarc.

party on
ot

Report post

Do you grind your teeth at night. I do. I can't chew on one side of my mouth. The uppers on the left are very painful. My dentist made me a night guard which keeps me from exerting pressure on that side. The gums are like elastic bands around the teeth and if they are constantly in tension, they can never have time to heal. I got alot of relief from the mouthpiece. Good Luck

Report post

There seems to be a real link between sarco and tooth loss/problems. If you google sarco and teeth you get many hits, including explanations by He Who Shall Not
Be Mentioned. I blamed my problems on lack of adequate dental care as a child, until my dentist asked me if there was a link between Remicade and failed root canals. So I looked, and us sarkies are known for tooth probs due to the calcium/vit D thing. Mouth ulcers due to our general poor health and the fact that broken teeth cause rough areas that irritate the mouth.

Report post

Now I finally understand why when I am down and out with a flare, my gums feel inflammed. I didn't realize the timing, but every three weeks or so, there it is. The pain sometimes make me want to pull out all of my teeth. I will definitely inform my dentist of this consensus.

Report post

Hi, I'm in the West Midlands.............and looking for a research programme too. The Doctors and Chest People say that they are unaware of anything in the Uk in the way of research but recently a fellow sarky "The Gardener" posted a link to a scandinavian research into sarcs that's about to go live. See if you can find it under his name, he's inspirational and really funny with it! If you cant find him, let me know and I'll send you the link.

Report post

Thank you all! I have complained and moaned about pains in my face. earache,headaches, and the problems with my mouth, ulcers, swelling of my lover lip, bleeding gums, and yes it is about every three weeks or so, now I realise that it is sarcs! my lung guy has discharged me as I have COPD as well and said that he did not think the sarcs would get any worse, not worried about my legs burning, my feet with lumps and bumps and falling skin as if I was a snake losing my skin! moan over going to see another dentist and hopefully he will be able to sort of the mess I am in, would have gone to ex-husband as he is a dentist but mind land up with no teeth at all! have a good day everyone, love the humour and am so pleased I have you lot to moan to!!!!

Report post

I am not sure if it's sarcoid , but I have had the same thing for a number of years . If you find out please let me know. I have asked about many health concerns and none of them have been answered .

Report post

I discussed sarcs with my dentist about three years ago, as he discovered I had a dry mouth, which had irritated my gums resulting in my visit to him. I remember complaining about an ever widening gap between my front teeth, that had appeared not long before my visit. It was a spontaneous widening, without injury, or pain. He said he'd give the tooth another 5 years or so before it fell out. I can drive a bus between the gap now! He told me he could sort out the movement of my teeth, and give me a set of veneers, but he said I would "have to remortgage" my house! I'm with Okie tokie on this one, and I'll endeavour to develop a liking for soft foods. I havent lost any yet, but my front two are now reminiscent of Bugs Bunny, with gums receding etc, but I dare not bite on a carrott, just in case. Oh well, teeth are the least of my problems...................God bless.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders