Is this pain due to my Lupus??

Hi, a new to Health unlocked. I have Lupus osteoarthritis and rheumatoid arthritis. I am at the moment on Azathrioprine at a dose of 150 mg a day although after about a year and a half my rheumatologist is thinking of changing due to continued joint inflammation and swelling and of course the dreaded pain associated with it 😔 I have recently had the most awful jaw pain that prevents me from closing my mouth proper and goes from my jaw to my neck n head. The pain is sometimes really unbearable. Has anyone had these symptoms with Lupus? Not sure if it's Lupus symptoms or if I should visit my dentist? Don't see my rheumatologist for another 6 months 😔

Lots of Love ❤️

18 Replies

  • Hi jopo

    Yes your jaw pain is connected to lupus. There's a particular joint there called the TMJ( has a long name) that can be very painful when inflamed causing cracking and stiffness!. Your dentist can help with this as it can be hard to open your mouth, maybe suggest a mouth guard if grinding teeth is a problem.

    Also as it can be part of lupus your treatment could be looked at by your Rheumy so do mention it to him. If your flaring generally could your treatment be adjusted to help ie extra steroids for a short while!. This could be talked about with your GP.

    Hope I've helped. It will get better once the inflammation subsides. I 've had it myself. X

  • Aww thank you so much for taking the time to reply to my post Misty14 Pain is not any better have some steroids at home from my hospital discharge so think I'll start taking them for short period of time 2 see if that will help. Can't cope with this much longer! Hope you are well take good care


  • Hi jopo

    Sorry you have been in hospital recently. Good idea to try the steroids , don't just stop taking them, that's dangerous you have to reduce gradually to help your body adjust!. It's tough dealing with all these conditions as well as lupus!. Have you got an appointment to see your Rheumy soon as you were in hospital?. You could try bringing it forward by going on a cancellation list!. I've got a vascular medicine appointment tomorrow I've been dreading!. Hope the pain settles soon. X

  • Good luck with tomorrow Misty - will be thinking of you. Xx

  • Hi Twitchy

    Thank you so much for your lovely message. I will post an update. Hope your coping.Xx

  • A little fraught as Scleroderma is looking increasingly likely and I'm all aches and lots pains after the dogs bombed me on the beach today and I fell hard! Hurt my foot and can barely weight bear on it! 🙄

    Been wondering at same time how you are. X

  • Hi twitchy

    Sorry about your foot. If it doesn't improve you might need an X-Ray. There's always something with us!. Sorry too about your mum in law. Vascular medicine may want to rule PAD out for me. Hope it goes well for her. Health wise I'm a bit flarey but pleased steroids down to 8mg!. Have had good relief from injections for right leg nerve pain. Just don't want same thing to happen for left leg!. How do you feel about the MMF and possibility of scleroderma?. Hope it's helping you. X

  • Thanks Misty - I cut out the part about my Mother in law in case it was insensitive to mention it here to you today of all days. I know how nervous you are about it.

    I keep hoping I'm just imagining the hard fingertips or that they are part of my ompholyx or eczema or viral as gp thought.

    Foot fine now so think it was just a small twist. Honestly the dogs what are they like?! It was the older one being chased by the young blonde who loves to nip his paws. They weren't looking where they were going and neither was I because I was pulling my hat and gloves on in bitter wind when woomph! Lucky it was just hard sand!

  • Hi twitchy

    That was very kind of you. Thought I was going mad, saw about your mum in law then it disappeared!. I'm really scared but feel well preparedthanks to our fab forum!. Great news about your foot. It's heartening isn't it when we can do medical symptoms in a normal way!. We're almost surprised aren't we when our bodies co-operate normally!. Your lovely dogs must like the move and new walks!. X

  • Bless - so sorry I made you think you were delusional!

    Not moved fully yet. Back on island home but both have beaches nearby. New beaches and walks to enjoy down there and far less wind !

    What time is your apt today so I can be there in your pocket? X

  • Hi twitchy

    So appreciate your good wishes. I felt a lot of you with me from forum today. Appointment was swift , a quick test of feet and leg pulses and declared nothing wrong with arteries!.GP surgery had overreacted!. She said if cuff on Doppler wasn't on properly it can give false poor readings!. If only they would do a series of tests it might have saved me a lot of angst!. BIG RELIEF!. Now for recovery!. Enjoy your island home. How long are you there for?. Appreciate your support. X

  • Absolutely delighted for you Misty! And that dodgy cuff has a lot to answer for eh?!

    What a relief though

    Only MiL to fret about now as she's a massive hypochondriac who has moaned about her alledgly terrible health since I first met her 40 years ago, but outlived the lot, includingboth my parents, by decades.And her mind is still razor sharp too!

    Now she has got to have these stents and I do feel for her because it will so compromise her mobility for a month. But at the age of 86 with so many things wrong, she's actually doing rather well I feel - all things considered. X

  • Hi twitchy, thanks for replying. One way or another we're put thru the mill by the medics!. It's wonderful they'll do those stents as MIL is 86!. Good luck with the care of her. I knew a hypochondriac who lived to be 90 because had good medical care!. Perhaps that's what we should be?. Ha!. Take careX

  • 🙄🤗😘

  • Happy for you Misty !!

  • Thank you very much Isam, hope your well. X

  • Hi Jopo280886,

    Welcome to the LUPUS UK’s HealthUnlocked Community!

    I am sorry to hear you have been feeling poorly and wish to speak to your rheumatologist at a sooner date. Have you thought about ringing your rheumatologist for a phone consultation?

    Jaw, neck and head pain could possibly be associated with temporomandibular disorder (TMD) where the ‘chewing’ muscles and the joints between the lower jaw and the base of the skull are affected. According to The Lupus Encyclopaedia, clenching the jaw muscles can cause spasms in the neck. However, this pain can be treated by relaxation techniques or a ‘bite spacer’ that you can get from your dentist. The NHS Choices website provides you with tips on how TMD can be treated:

    Wishing you the best of luck, let us know how you get on.

  • Hi and welcome!

    I think it would be a good idea if you visited your dentist who might refer you on for a consult with a dedicated oral consultant and arrange ultrasound or x-ray of your jaw and parotid glands. I have just been diagnosed with TMJ which my oral consultant felt was being caused by clenching too hard on my mouthguard and probable jaw arthritis.

    She gave me an NHS sheet on exercises for TMJ to follow - haven't had time to start yet as too busy doing time consuming stuff with my eyes🙄

    One thing I would say is that you probably shouldn't take those left over steroids without telling your GP or rheumy as they suppress your immune system and can cause other problems - tempting as it is just to go ahead and self administer if you have them sitting in your drawer!

    Six months seems a long wait to me - can you phone a rheumatology nurse helpline or your consultant's secretary and explain how much pain you are in with either Lupus, RA or OA perhaps?

    If the Azathioprine isn't helping your arthritis enough then you may need to change to another disease modifying drug sooner rather than later - especially if the pain is due to RA synovitis. Alternatively you could see your GP who may be able to write to your rheumy on your behalf and push for your appointment to be expedited?

    Hope this helps.

    Twitchy x

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