New symtoms after having for over 20 years - LUPUS UK

LUPUS UK

27,699 members23,817 posts

New symtoms after having for over 20 years

Susan712
Susan712

Hi everyone does any one else suffer with terrible pain in their face jaw and teeth ??. I have had bouts of sinusitus in the past however recently i started with terrible toothache on the right side if my face. I visited the dentist who did exam and xrays and said my teeth were fine. I went to doctors and explained also told her i have terrible facial sweating she gave me antibiotics for a week and it worked , pain free and no sweats. Two weeks later and i am currently on my hols in crete. Yesterday it started again and last night was horrendous pain for hours in my teeth gums jaw and face again with facial sweating. Luckily it has eased this morning. Any idea's what it could be ??

9 Replies
Hidden
Hidden

Trigeminal Neuralgia is what it sounds like to me? I know this occurs in Sjögren’s - which is my main disease. Fortunately I only get TN when I cry or have a cold but it is an appalling pain - some say one of the worst types of pain there is. I think only neurologists can diagnose it but I could be wrong?

Susan712
Susan712 in reply to Hidden

Thanks twitchytoes for your fast response, i have sle and it has been mainly well controlled with hydroxy and methetrexate however this year i was diagnosed with atrial fibrilation then in May i started with 3 months of continuous foot and ankle pain also pain shooting down my leg. I went to see physio who told me it was my perinial nerve that runs from hip to foot, he gave me daily exercises to do and it improved . Now this not sure what the doc can do for my facial pain ??

Hidden
Hidden in reply to Susan712

en.m.wikipedia.org/wiki/Tri...

All forms of nerve pain are absolutely horrible but any kind of chronic facial pain is the worst.

I don’t think the drug options for it are any different to those for other nerve pain eg Gabapentin, Pregabalin or Carbamazepine.

I have most pain in my lips and gums now but it is more in keeping with Burning Mouth Syndrome (BMS) than TN - worsens in the evening and night but quite numb throughout my face now as I have small fibre neuropathy everywhere. People with Lupus can get these types of neuropathy and neuralgia too I believe.

I also have TMJ apparently but no wear and tear of the jaw so I think it’s all part of the Lupus/ Sjögren’s/ MS autoimmune spectrum. I don’t have AF though - although I am being given a tilt table test next week in cardiology so never say never.

Susan712
Susan712 in reply to Hidden

Thank you so much for the link you sent me. I had a good read and it definately sound like TM. I have an appt with rheumy on 22nd Oct so i will speak to her

Hidden
Hidden in reply to Susan712

My rheum has referred me for some kind of nerve conduction study of my face to test for TN? My new neurologist was a bit baffled at this but said to talk it through with neurophysiologist. I have had it going on for years though so I’m resigned now and just try and avoid triggers such as colds, sinus infections and crying. Couldn’t tolerate the medications. Hope your rheum can help. 🤞🏽

Sorry to hear about your pain ☹️. I have the same, though I have a partially collapsed nose too - possible vasculitis (very rare) or SLE inflammation pressing on nerves. High ESR.

Any one-sided symptoms need to be checked out by ENT. Hoping you have some relief for your holiday ☀️ xxx

Susan712
Susan712 in reply to eekt

Thanks for your reply eekt .Its good to know there are lots of nice lovely friendly people on here.

I have this down my left side it occurs every time i flare. The pain is awful. My dentist ruled teeth etc out. For me its plain old inflammation and responds to steroids. Hope you feel better soon.Lou xx

Thanks Louise . It has eased so much from last night but is still niggling in the background. Just going out sight seeing so got plenty of pain meds.

You may also like...