Jaw pain!: Hello good people :) hope everyone is as... - NRAS

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Jaw pain!

Simone_Holly profile image
12 Replies

Hello good people :) hope everyone is as pain free as possible! I'm hoping to pick your brains on how to ease jaw joint pain?! As my jaw is my new flare! Woo! Its bloomin painful, making my ear, neck, head and jaw hurt, plus some dizziness! Annoyingly my consultant app last week was cancelled and rescheduled for September, no answer from Ra nurse either! any ideas??? Thanks in advance :) x

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Simone_Holly profile image
Simone_Holly
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12 Replies
sandyf profile image
sandyf

Hi Simone. Yes I have been suffering from jaw pain etc for last 2 years, am under maxo facillio consultant for it Off there today but my jaw has worn quite badly and may need surgery. I feel for you, keep taking the meds.

Simone_Holly profile image
Simone_Holly in reply to sandyf

Hello, thanks for sharing your experience. I'm sorry your jaw has been causing so many problems and that you may need surgery. I really hope your appointment went well and that they can find a way for you to be in less pain soon. I'll certainly keep taking the meds :) take care x

medieval-ali profile image
medieval-ali

Hi, sorry to hear about your jaw, it's possibly the worst place to flare as then you can't eat as well as all the pain, I have found nothing unfortunately helps it's a case of riding it out, lots of home made chunky soup liquidised is the only way through the hunger. I hope you recover soon.

Alison

Simone_Holly profile image
Simone_Holly in reply to medieval-ali

Hello, thanks! I've been living on soup for the past week :) and ive rediscovered custard, which all things considering, has made me quite happy!! hope your jaw behaves itself and you're not in to much discomfort, you're right though, out of all my flares (not my 60s trousers!!! Haha awful joke, sorry) the jaw has been one of the worst! I'm sure my friends are enjoying me talking less though!! Take care x

allanah profile image
allanah

I was referred by my dentist to maxillary facial. They made me a mouth guard to wear at night as they felt I was clenching my teeth with the pain even when asleep, unfortunately I couldn't tolerate it but it was worth the try x

Simone_Holly profile image
Simone_Holly in reply to allanah

Hello, thanks for this, I might mention it to my nurse (when I can get hold of her!!) as like you say, it might be worth a try. Sorry the guard didn't work for you though, I hope you've found other meds or ways to control it and that you're doing ok x

Jeanabelle60 profile image
Jeanabelle60

Hello Simone, actually you have helped me with something I have been experiencing for about 4 years now due to RD on both side of my jaw.......you mentioned dizziness, what a relief, someone else has this!!!! I have been thinking all sorts when I would take a 'wobbly'......whats wrong with me that i never connected jaw, ear, neck, head with dizziness?????

I attend a Dental Surgeon at my local hospital. My jaw on both sides is a bit of a mess but the left side is the worst.......my jaw in the x-ray looks like a big fluffy cloud! Really it does, no detail at all. This particular Surgeon has no problem with injecting steroids into the jaw to reduce a severe flair or in my case when my jaw 'locked' for about a week.....not nice believe me......

Anyhow I hope you get some answers and advice....all the best.

Simone_Holly profile image
Simone_Holly in reply to Jeanabelle60

Hello, glad to have helped :) you aren't silly at all! The only reason I connected the dizziness with it all is because I'm prone to ear infections (have been since I was young, not Ra related) and I've often felt dizzy because of them or had pains in my neck/head because of pressure. it's all a horrid side effect of the jaw stuff which can be quite annoying!

I'm sorry to hear about your jaw problems, that doesn't sound fun at all. I've had a steroid injection in my hip and I thought that was bad but in the jaw doesn't bare thinking about! I hope it helped you.

Thanks for letting me know about your experiences :) you take care x

It is so amazing how differently people are affected by these diseases. My clavicles are affected along with all my large joints and this causes pain radiating up to my jaw. Hoping it settles down maybe! cheers, Doreen

Simone_Holly profile image
Simone_Holly in reply to

Hello! Yes it's quite interesting to hear about how other people are affected and how they manage. Thanks for sharing your experiences :) I hope your jaw doesn't cause to much grief and that you're feeling ok x

lainee profile image
lainee

Hi I got jaw pain but thankfully it settled after a few days but I feel It hiding in the background just little twinges so hope you are as lucky as me and it won't last long as it was horrible xxx

Simone_Holly profile image
Simone_Holly in reply to lainee

Hello, thanks! I'm sorry you've had some twinges and I really hope they stay away for you. I was hoping mine were just that, but annoyingly it's all been quite persistent and seems to insist on hanging about at the moment! Hopefully not for much longer though :) take care and look after yourself x

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