Facial/Jaw Pain: Hello everyone, Does anyone suffer... - LUPUS UK


30,420 members27,002 posts

Facial/Jaw Pain

Blackbutterfly74 profile image

Hello everyone,

Does anyone suffer from jaw/facial pains? It feels like what I am assuming that lock jaw would feel like. It doesn't feel like spasms but it is painful maybe like cramps a little. The pain is frequent and very hard to describe. Should I call my rheumy about this?

11 Replies

Hi Blackbutterfly74,

Yes! I don't have a diagnosis apart from " auto immune illness ", lupus bloods are equivocal and C3 complement low.

Pain has been present for 10 months now. It started in my jaw and soon spread to my nose. I also have headaches and blurry vision, all 3 symptoms are connected. At first I couldn't eat, lost 8lb in 5 days, my weight has stabilised since but eating is still a problem. The pain has settled with high dose prednisolone and methotrexate, still get flare ups.

This is against a background of 1 year of fatigue, weight loss, arthralgia, myalgia, anemia, low Vit B12 and Vit D.

Have tried conventional painkillers, Gabapentin and amitriptyline with no effect.

I would definitely phone your Rheumy as jaw pain can be an important symptom.

If you get any answers/ diagnosis I would be interested to hear about them.

Good luck


Blackbutterfly74 profile image
Blackbutterfly74 in reply to

Thanks so much for your response and telling me your story. I was just recently diagnosed and the only thing im on is plaquenil. I will call rhuemy and let you know if i find out anything. There is just so much to take in and the constant aches and pains are horrible. I have constant chest pain, headaches, blurry vision and now this strange jaw/face pain.

Maximilian profile image
Maximilian in reply to Blackbutterfly74

Plaquenil (hydroxychloroquine) soon you'll be on prednisolone, azathioprine and ad cal I've been on this medication for 15 years

Blackbutterfly74 profile image
Blackbutterfly74 in reply to Maximilian

Maximillian thanks for your response. If you dont mind sharing what are the other meds treating?

Hi blackbutterfly74, I really sympathise as this pain is miserable. I first presented with this pain when I started to be ill. Talking, eating just sent it into spasm. My GP said at the time, it could be stones in saliva gland, but that was ruled out. My face would go into spasm on one side too. The pain did move up to my temple area and I had the feeling of electric shocks going through my head. For me, the cure was steroids. It wasn't until after I had been diagnosed with lupus, They realised that my pain had been vasculitus. Sjorgrens can cause all sorts of problems too. Definitely mention it at next rhuemy appt.

Blackbutterfly74 profile image
Blackbutterfly74 in reply to

Thanks for your response 6161. I do have the temple pain as well as neck pain and shoulder pain. Along with other pains. Im going to call my rheumy tomorrow as my next appt isn't until June. Hopefully they can tell me something and i hope its not serious.

in reply to Blackbutterfly74

Hi blackbutterfly74, by all means call your rheumy but don't start to panic. Plaquenil can take anything up to 6 months to kick in. I'm not saying, suffer til June, but stress does not help. Let us know how you get on. Wish you better.

Olibop profile image

Yes I suffer from jaw pain and face pain it sometimes gets really bad my nose and my nose will go that cold it's as if it has frozen ! It also courses pain in my ears xxx

Blackbutterfly74 profile image
Blackbutterfly74 in reply to Olibop

Thanks for your response Olibop and I'm so sorry you're having those issues as well. I hope they can tell me something when i call the rhuemy.

Maximilian profile image

I get these, I think it's part of rheumatoid arthritis - quite an unpleasant feeling - can't speak or eat properly with it

Blackbutterfly74 profile image
Blackbutterfly74 in reply to Maximilian

Mine normally happens at night sometimes when eating but its out of the blue and its just started maybe 2 wks ago.

You may also like...