Jaw & tooth pain

Hi Christine

I was only diagnosed with lupus 2 yea45s ago, new gp/internist tested me for it. No one ever checked that before. Back in the late '90s I asked my then-doc if I might have lupus: no, absolutely not, impossible. Medical knowledge has come a long way since then.

I think I'm in a flare because new areas in my lower back have been hurting, and now this jaw pain. As I told Lily, I went to the ER last night after the pain got worse, in case I was having either a heart attack or stroke. With intense jaw pain, one has to consider the worst possibilities.

I've been in denial about the lupus right up until now. First thing I have to do is find a new rheumatologist and then I'm going to beg to try plaquenil. Other than that I take evoxac/cevimeline for dry eyes & mouth, gabapentin for RLS & peripheral neuropathy, ultram/tramadol plus tons of acetaminophen & ibuprofen for pain, none of which helped with the jaw pain much. And in the States, we're just entering our major feasting season!

On a brighter note, I am now completely out of pre-diabetes! Thank you cinnamon capsules!

Hey Lily! We say "hey" in verbal greetings tho normally we write "hi," drive the country furious when Willie Mays became a huge baseball star in the '60s. Now even Northerners use it.

I went to the ER for several hours last night. No heart attack & no stroke. The pain started Thursday only in one area & only if I drank something cold. By last night it had spread & even talking aggravated it, so after talking to an after hours nurse, I called a friend to take me to the hospital.

I had a lot of trouble with the site changes at the same time that I changed phones and couldn't access email for 3 weeks. So I've just not been on a lot. I am surprised how much I miss the old green banners, etc., on the site. I like blue but I still miss the green. I hadn't seen you on here and thought maybe you'd gone to London for a few weeks.

I don't know. The only gland pain I've ever had was in the '90s, stones in the sublinguals and parties already shut down. But you've got me thinking: on Weds. I tried some massage of the parotids. They talked about it & showed it at our in-person group last Saturday. Not gonna try that again! Thursday morning the pain started.

I'll call the dentist next week, but It's only a 3-day week. Meantime, when it's excruciating I put ora-gel on, but since it's such huge areas, whole right side, teeth & jaws, i don't know how safe that is.

Hi Shaq

The only thing I'm 100% certain of is this: ONLY gentle or soft pressure with toothbrushes! That applies to everyone but even more so to us.

I thought that someone on here had talked about jaw/tooth pain, so I wondered. Maybe I dreamt that, lol. But at least one person who's not on very often sometimes gets some skull pain.

There are blood tests for Lupus, or it's one blood test for all AI and different numbers mean different things. IDK as I've been in denial since my gp sprang that on me 2 years ago. Gotta find a decent rheumo.

Hi Shaq,

I hope you're feeling a bit better than when we last spoke. I'd firmly echo aitarg's advice on tooth brushing. It should only ever be gentle. It's much better to brush gently with a soft brush for longer periods than vigorously for short periods.

I can't use an electric toothbrush anyway, because the vibration sets my ear crystals on the move, but I only use a soft brush. On the other hand, I do brush my teeth for 2-3 minutes in the morning and a full 5 minutes before bed. So far I've only lost four - one to poor hygiene and diet in late childhood, one to an accident and two to dental malpractice. The latter experience means I keep dental visits to once a year, for descaling, and ask an awful lot of questions if a dentist ever suggests doing anything else!

Back in the 1960s my dad was persuaded by a young dentist that he should brush very vigorously with the hardest possible toothbrush, actively forcing the gums back from the teeth in the process. That always seemed wrong to me, but Dad was convinced. I don't know whether there was any connection, but he lost most of his perfectly healthy teeth to gum disease before the age of 60.

I still haven't established whether my readily-wandering ear crystals are SS connected. My GP says no, as did the physiotherapist who treated the last-but-one attack of BPPV (benign paroxysmal positional vertigo). They both say there's no such thing as an in-built tendency to BPPV and I'm just unlucky, but I'm not so sure...

Hi

?I will try and go easy on my teeth though old habits die hard

?I have  got bleeding gums and assumed my brushing wasn't good enough. the dentist hadn't heard of SS (asked me what it was ) and was only interested in money...he suggested I get 4 crowns as my teeth seem to have been affected by my GERD.  I am now looking for a new dentist  

 

hi

?since I started  plaquenil my joints and muscle pain has improved but I still cant lift my 13 month old grandson    ...and when I look down to read my neck gets painful and almost cant support my head after a few minutes. I am only really comfortable with my head and neck supported (as when sitting on a reclining chair)

?the rheumo I was going to said it had nothing to do with SS and gave me Lyrica (said was a trapped nerve) and gave me gabapentin 4 months later. I am going to try another rheumo and maybe an ortho as well...maybe I have hurt my neck ( this has been going on since last January and I have had numerous physio sessions and had 'shock treatment' therapy   ...nothing helped. 1 ortho put it down to ageing ( I was 64 last year and extremely active at the time). So maybe back to the drawing board ??

I too have severe neck pain and Sjogrens. Nothing has helped. I’ve tried everything from therapy, chiro, acupuncture, medication etc etc. I just live with the pain.  I also have headaches almost all the time. This has been going on for at least 20 years. Not a good quality of life but somehow I get through and don’t even mention it to anyone including the doctors. I’ve tried everything and have had every test possible and gone to so many doctors and they give up also. Think it just part of the whole autoimmune thing for me. 

Definitely stop brushing so hard! Maybe your guns won't bleed, or they'll bleed less?There is an American company which makes & sells wonderfully soft brushes. Bristles have rounded rather than cut tips, and I can feel the difference. They sent me several different types & shapes once after I called about their locally made floss, which I also love. The toothbrush I love happens to be the one for sensitive mouths. If you want the company name & contact, PM me.

No one mentioned it but let me just say: flossing is also supposed to be a gentle affair. If one's teeth are close together as mine are & it's sometimes hard to get the floss down, it's best to learn to do that gently. We aren't supposed to jerk it down on top of the gum between the teeth.

Good luck, Shaq. I alternate high-dose acetaminophen & ibuprofen around the clock for my neck pain, but mine apoears to be caused by arthritis from a serious injury when I was about 2.

I cant believe u have been suffering with this pain for 20 years .  It's fantastic that u just get on with it. I have had enough after 1 yr 

 

I too have teeth that are close together and using the floss with force ...learnt something new today ....thanks 

​unfortunately I have been advised by gastro not to take anything stronger than panadol advanced and 3 tabs of that eases pain for a couple of hours. I will pm u for name of the toothbrush company..though I doubt I will be able to get it here ( currently living in Middle East)    

I had 3 bouts of BPPV, 2005, 2009, 2017. Went away with physical therapy and Epley maneuvers.

Yep - mine too. At least the second attack, at the start of this year. A physiotherapist fixed it in minutes with a competent Epley manoeuvre.

Different story with the first attack, about 25 years ago (due to slow-speed drill at the dentist's). That time I stupidly consulted an ENT doctor who performed some kind of manoeuvre that left me feeling like death! I threw up on the floor in his consulting room, had to take a cab for the half-mile home and felt terrible till the next morning.

The next one, at the start of this year, I also consulted an ENT doctor (glutton for punishment). He looked in my ear, ordered syringing and a hearing test - quite useful at my age - then pronounced nothing wrong. My wonderful GP (PCP) sent me to a vestibular physiotherapist. Now I know where to go in future.

Had another minor attack a couple of months ago, again due to dentist using slow-speed drill, but that seems to have cleared up spontaneously. Still wondering whether or not these three attacks of BPPV are SS-related.