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

LUPUS UK

32,212 members28,556 posts

Facial/Jaw Pain

Blackbutterfly74 profile image
11 Replies

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?

Written by
Blackbutterfly74 profile image
Blackbutterfly74
To view profiles and participate in discussions please or .
Read more about...
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

Keyes.

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 toBlackbutterfly74

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 toMaximilian

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 toBlackbutterfly74

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
Olibop

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 toOlibop

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
Maximilian

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 toMaximilian

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

Not what you're looking for?

You may also like...

Jaw Pain

I know people have written before about this, I think. I have terrible jaw pain right now. Started...
Natura profile image

Jaw pain

Does anyone else experience pain in their jaw? My jaw momentarily dislocated at the end of last...
Haubrey1 profile image

Facial Pain

Hi All, Just wondering if anyone else gets this. Whenever I have bad/stressful news that involves a...

Lower jaw pain?

Hi there Iv bin getting really bad jaw pain on my left side, it's more at the back where my back...
Mainshah profile image

Jaw problems

I do not know exactly how to describe it. Quite a few time when i eat my jaw starts to feel like...
LouLamb profile image

Moderation team

See all
Debbie_kinsey profile image
Debbie_kinseyAdministrator
chelseawong profile image
chelseawongAdministrator
michaellasmith profile image
michaellasmithAdministrator

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.