Jaw and teeth pain: I have UCTD and have been... - LUPUS UK

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Jaw and teeth pain

paula-moo profile image
31 Replies

I have UCTD and have been struggling with extreme tooth/jaw/face pain on the right hand side of my face for weeks now. I have had a root canal filling on one lower tooth last week but the pain is still there in the lower teeth and is also still affecting my top teeth. I am unable to pinpoint one tooth that the pain is coming from. My sinuses on the right side feel very sore and inflamed, although I do not have a sinus infection (I have had many of these over the years and this time I have no discharge or cold and have taken 2 lots of antibiotics just in case). Upon another x-ray they said that the floor of my sinuses cavities sits very low into the roots of the top teeth, where there should normally be a thin layer of bone to separate them. I am in agony and between the dentists and Doctors they do not seem to know what to do. Has anyone else with UCTD had similar problems and if so were you able to get any help from anyone? I'm just not sure where to go next with this all and which type of specialist to try and seek the opinion of,who understands UCTD and dental/face/sinus issues? Any help that you could give me would be really appreciated. Many thanks.

31 Replies
Annienjoe profile image
Annienjoe

I have been investigated for lupus but have no specific diagnosis.

However I have 30 years experience of the teeth/jaw/face pain you describe and the specialist you need to see is a Oral and Maxillofacial surgeon at the dental hospital or whichever local hospital has an appropriate department.

paula-moo profile image
paula-moo in reply to Annienjoe

Many thanks for your reply.

paula-moo profile image
paula-moo

Many thanks for your reply x

eekt profile image
eekt

I can feel your pain - I've had sinus pain and 'mucopus' for years (on one side) and ENT have shrugged their shoulders after a clear sinus CT scan and negative ANCA....HOWEVER my new dentist (the 10th - I had a freak canine tooth halfway up my nose..) did an x-ray last month when I explained and spotted the ragged edge of inflammation on my upper jaw....dental work can trigger osteomyelitis

I have a basketful of ENT problems aside from that and the NHS has declined to help, so my sister is sponsoring a private consultation in the hope that I lever a Maxillofacial referral, amongst other things, because I had £4k worth of orthodontics (to bring aforementioned rogue tooth in to place and correct my bite) and losing bone would be the final straw (I look so beat up with my nasal deformity that I'm only worried about eating...)

SO try a maxfac specialist, hard to come by, but it might be worth travelling to London for...facial pain just makes everything unbearable...

Wishing you well xxx

paula-moo profile image
paula-moo in reply to eekt

Gosh,that sounds really awful for you.I hope that all goes well for you and that you finally get your pain resolved.Thanks for your reply xxx

eekt profile image
eekt in reply to paula-moo

Thanks, the way I look, one day a doctor is going to realise it's not 'health anxiety'! LOL! All the best! xxx

paula-moo profile image
paula-moo in reply to eekt

You can but only hope! Wishing you all the very best for your future treatment.xxx

Annienjoe profile image
Annienjoe

There is an excellent max. fax. Department at Monklands DGH in central Scotland if that's anywhere near you.

paula-moo profile image
paula-moo in reply to Annienjoe

Many thanks for your reply but unfortunately I live in the South West.I will do some investigations.

eekt profile image
eekt in reply to Annienjoe

Thanks for that, I'll try my best for a referral there! Have you had any resolution? I'm starting to swell a little in the flesh below my cheek bone, and a few days ago the 'mucopus' - it comes out my mouth when I sneeze?!? (both ENT's just said YUK but offered no help) - was bloody xxx

Annienjoe profile image
Annienjoe in reply to eekt

I have had many, many, problems over the time but I have always been happy with the treatment I received. My last operation was a bone graft from my lower jaw to my upper jaw/sinus which, so far, has made a huge difference.

I would definitely recommend this department.

eekt profile image
eekt in reply to Annienjoe

Argh, sounds fairly drastic but I'm very glad the surgery was a success! Thanks again! xxx

Annienjoe profile image
Annienjoe in reply to eekt

Good luck with the referral.

eekt profile image
eekt in reply to Annienjoe

Thank you, hope you get to see a decent rheumy soon! xxx

Annienjoe profile image
Annienjoe in reply to eekt

Just to affirm this recommendation is department specific. Thanks for your best wishes.

misty14 profile image
misty14

Hi Paula-moo

Facial pain is horrible to cope with as it's so unrelenting. You've had some great replies saying about the maxi facial dept . If your in north Devon then NDDH in Barnstaple has one. I'm UCTD as well and have had a lot of problems with my teeth due to the inflammation!. I've had root canals too. Another suggestion is we can have TMJ which is pain in the jaw joint. Your treatment for the UCTD maybe could be tweaked to help with this condition that makes the jaw painful and stiff. Where are you treated?. Your dentist can also help with a mouth guard as you may grind your teeth at night without realising making it all very painful. I have a mouth guard that is helping me. Facial pain can also be treated via better pain relief if no other reasons for your pain can be found. Another example is trigeminal neuralgia a very painful nerve condition that I developed years ago after having wisdom teeth out. I was on morphine for years for the pain but eventually it all settled down!.

I hope some of my suggestions are helpful and your better soon. X

paula-moo profile image
paula-moo in reply to misty14

I am so sorry to hear about all of your pain and problems,especially as it has lasted for so many years.I live in Weston Super Mare and I am under this hospital.However,I have tried to contact them regarding this unrelenting pain and nobody is returning my calls.I am returning to my dentist tomorrow as I am still in so much pain following the root canal.I have worn a mouthguard at night for years due to jaw clenching but I am unable to wear it at present with this level of pain.I also struggle with my TMJ joints,which hurt at times and prevent me from opening my mouth fully.I shall ask the dentists about local maxillofacial specialist tomorrow.Many thanks for your helpful reply.I wish you all the very best for the future. X

Roanna profile image
Roanna in reply to paula-moo

paulo-moo

So sorry to hear what you are dealing with. I used to be a Certified Dental assistant in Canada and I remember getting a few patients with the same problems. Unfortunately one dentist I worked with kept doing more root canals when he first came across this issue which left a few legal battles. Above info is great so I hope you can see a specialist. For helping you open your mouth more, one dentist I worked with use to suggested a massage therapist who actually goes inside your mouth to massage around your TMJ and surrounding muscles. They are hard to find because it takes extra training. I often will hold my fingers on my muscles in the TMG area or on the sore spots and apply pressure while opening and closing my mouth. You will notice the pain start to subside once the muscle relaxes. Good luck.

misty14 profile image
misty14 in reply to paula-moo

I'm very sorry Paula-moo that you are suffering so much and can't get sense out of your local hospital. It would be your dentist who can refer you to the maxi facial dept at the hospital and there's a also another very specialised dentist who looks at problems with root canals , can't think of the name but your dentist will know. Good thing your going tomorrow. Hope it goes well. Thank you for your good wishes. A lot of my mouth problems have been sorted out now so not such an issue for me. Same can happen for you. Keep us posted. X

Fennella02 profile image
Fennella02 in reply to paula-moo

Sounds awful. I get a much milder and intermittent version so I can kind of relate. Can you get referred to the dental hospital in Bristol? At least you’re very close to there. It sounds as though you need more than W-s-M can offer!

paula-moo profile image
paula-moo in reply to Fennella02

Thanks for your reply.I'm seeing the dentist later today and I will ask for a referral to the Bristol dental hospital.Best wishes

Suzbmd profile image
Suzbmd

Yes. I too have UCTD and suffered significant facial/jaw pain on right side. My Rheumatologist refereed me to an ENT who diagnosed it as TMJ. Pain improved after several months wearing night guard and doing daily exercises.

paula-moo profile image
paula-moo in reply to Suzbmd

Thank you for your reply. I am glad that your pain finally improved.Best wishes.

Pzer profile image
Pzer

Two possibilities are trigeminal neuralgia and TMJ. Your dentist would notice TMJ as it’s really hard to sit through any dental work and keep your jaw open and also your jaw joint will probably click. It’s a dull throbby type of pain.

Trigeminal neuralgia is commonly flashes of the the worst pain ever that come on suddenly due to slight movement or all

Of their own but I’ve had severe episodes which have been 20-40 minutes and I’ve read from some people that they have constant pain. Hopefully you don’t have it as it’s horrible and no pain killers touch it. I have been lucky to respond to homeopathy my sister gave me and I only get short bursts now. The long episodes are impossible to live to with.

paula-moo profile image
paula-moo

Yes, I do have pain and issues with my TMJ but this pain does feel very different and is constant. I had thought about Trigeminal neuralgia but this pain doesn't seem to be coming and going. I am hoping that if I can get a referral to a specialist soon that they may be able to establish what the cause of this pain is. Many thanks for your reply. Best wishes.

Susan712 profile image
Susan712

Hi i started with horrific constant pain in all my teeth on the right hand side of my face , i have never felt pain as bad . I had visited the dentist who said my teeth were fine . I was in so much pain i ended up seeing a neurologist at the hospital who diagnosed trigeminal neuralgia and put me on gabapentine as he said pain killer dont touch nerve pain and i needed anti epilectic drugs. My doctor changed these to carbamazepine which i still take as even though the gabapentine stopped the pain they made me feel like a zombie i was always asleep and when awake kept loosing my balance. Now pain free thankfully. I hope that you get the right help soon and are pain free. xx

paula-moo profile image
paula-moo

Wow,that sounds awful for you. Thank you for sharing this with me. I am seeing the dentist later today and so I am hoping that he will refer me to a specialist if he feels that he can't find any cause for my pain. Best wishes.xx

Djlr profile image
Djlr

Well the Root Canal sounds like it is definitely causing a lot of problems for you.

Whenever a lupus patient has any type of surgery – we may need steroids to get over a flare in that area or it may extend to other areas of our body due to our body attacking – because it thinks it has to fight to keep us alive. Therefore, any surgery should be followed with a trip to the rheumatologist or a pre-trip to the rheumatologist to make them aware of what we are doing so that they can then prescribe before or afterwards a small short possible 30 day supply of steroids around 20 mg and work down to "0" because it May be activating your Lupus in those areas. Lupus likes to attack the weakest areas in our body. Well currently, it is your mouth area.

Several of us have had TMJ, twice now I have gone to the chiropractor and he was able to knock gently on my jaw area and put it back in place and within two weeks it was gone- the pain.

I do not believe that's what you need right now, but you may need to treat a sinus infection??? Since your sinuses are hurting it may have caused your sinuses to flare???

I always take 4 500mg amoxicillin before any dental cleaning. And one time, it was really recommended for lupus patients and has helped me tremendously because dental work can loosen so many toxins in her body that can cause lupus flare's. I never understood why I felt so bad 3 to 4 days after every dental visit, and now that does not happen anymore. The toxins were too much for me. Therefore, I believe you may have toxins that have been released and they need to be brought back under control and I had one bout of steroids could fix that - talk to your rheumatologist💜💜💜

furtherfood.com/is-your-den...

paula-moo profile image
paula-moo in reply to Djlr

Thank you for your detailed reply.I have left 2 answerphone messages for the Rheumatology department to call me back but I still haven't heard from them.I have taken 2 lots of antiobics and the Dr has given me a 3rd lot if I need them.I am now on a referral list for the Bristol Dental hospital to see a specialist who deals with pain from soft tissue,nerve or bone but there is a long waiting list.Hopefully at some stage I will get some relief from this constant pain.Many thanks again and best wishes to you.xxx

Djlr profile image
Djlr in reply to paula-moo

Did you say you had tried steroid yet/prednisones? I think I would do that before third round of antibiotics – we don't want to build up a resistance to antibiotic's.

Since you have Lupus based upon what I've seen with other people living with Lupus, I think steroids might be a better route to go and your rheumatologist needs to be brought into the situation for sure.

Update:lupusinternational.com/Rela...

This article indicates steroids could be a hindrance to our dental procedures.

drjockers.com/root-canals/

And now this article indicates that a root canal can be a chronic burn on the immune system. As I've indicated before, I do take 4- 500 mg amoxicillin each time before I go to the dentist to prevent toxic released into the blood stream as they work in the mouth. It did make a big difference for me, did you "premedicate before you had the procedure"?? Just a thought…

I feel for you, it's not good when they're not helping us correctly and fixing our pain and infections.

And you definitely need to see the specialist, and get them to talk to your rheumatologist since you are a Lupus patient.

paula-moo profile image
paula-moo in reply to Djlr

I am unable to tolerate steroid tablets and always have to have an injection (which for some reason is fine) if the swelling of my hands and fingers gets too much when I usually have a flare up. All of these pain/jaw/tooth issues started before I had the root canal done and I was hoping that it would all settle after this treatment but it would now appear that this wasn't the cause of my pain. I am going to chase the rheum department again to see if they can help. Many thanks.xx

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