Lupus and jaw/gum pain

[Jasmine22]

Hi everyone. I hope you’re having a good day.

Does anyone suffer with severe pain in their jaw and gums? This has come on for me in the past 10 days and it’s agony. I can’t sleep and it’s just constant, throbbing pain. I saw a rheumatologist on Friday and she said that it’s fibromyalgia. I had previously been diagnosed with ANA negative lupus due to my symptoms and severe rashes. Since moving across the country 18 months ago, I’ve been told that I just have fibromyalgia and hyper mobility.

I also had unexplained swelling of my lips last week whereby they just became massive for no reason. My tongue and roof of my mouth are horribly cracked most of the time too.

Any input would be appreciated please 😊

[ClodaghK]

Hi Jasmine,

I am yet to be diagnosed with Lupus but I have suffered with severe jaw pain. It got so bad before that I used cry when eating, I just couldn’t open my mouth at all!

After putting it off for awhile, I eventually went to see my dentist and was told it was severe TMJ - they had asked if I was stressed/anxious etc as this can be caused by excessive teeth grinding! At that stage I had been going through an exceptionally bad patch with my health & in the process of getting B12 and Iron injections so I guess it all played a role in it!

I ended up having to get a mouth splint fitted to wear when sleeping to stop me grinding my teeth & I also had Botox injected in my jaw to release the large amount of tension that had been built up.

Since then, I haven’t look back thank god. For immediate relief I found an ice pack against my jaw so soothing and plenty of painkillers.

I hope you get some relief soon x

[Jasmine22 in reply to ClodaghK]

Thanks for your reply Clodagh. I’m so glad that it’s all sorted for you now. I went to the dentist and he had no idea what was causing mine. If it doesn’t ease in a few days I will contact my GP. It would be so wonderful to wake one day and feel something resembling “normal”. Take care x

[Zezes-nan in reply to Jasmine22]

Hi Jasmine

I have jaw pain and my dentist referred me to the maxiofacial team at our local hospital who diagnosed me with TMJ, I wear a mouth guard at night as I grind my teeth. Might be worth asking your GP if they can refer you to maxiofacial consultant. Wishing you all the best

[Jasmine22 in reply to Zezes-nan]

Thank you! I shall keep it in mind 🙂

[Maddymay65]

Morning , so sorry to hear you are suffering , I get jaw pain a lot, I too have lupus and fibromyalgia. I find heat and painkillers combo helps short term , I use a microwave heat pack and wrap it around my jaw. The only pain killer which really helps me is codeine I don’t like to take a lot but with paracetamol and a strong cup of coffee.It gives relief .I use the heat pad at night too. Long term, I am prescribed pregablin three times a day which is helpful.The swollen lips sounds like an allergy? Maybe keep a good diary to identify culprit,

Hope some of this helps and you can get some relief. M x

[Jasmine22 in reply to Maddymay65]

Hi Maddy. Thanks so much for your reply. I’m unable to take codeine as it makes me sick unfortunately. Did you have a positive ANA test for your lupus? I was taking Hydroxychloroquine originally but my heart rate soared and my hair fell out amongst other things, so I had to stop it. Thank you for the heat pad advice; I’m now going to try it x

[Maddymay65 in reply to Jasmine22]

Hi JasmineI had a positive ANA when first diagnosed 15 years ago , It really can be trial and error with drugs , I take codeine and hydroxy and am fine antibiotics are a nightmare so I dread getting an infection. Try not to let your rheumatologist out you off, you are entitled to your appointment time if they are not empathetic and supportive try and see someone else. Autoimmune illness is hard enough without dismissive doctors. Hope heat pad gives you a little relief, fingers crossed, M x

[Colonial-girl]

Hi Jasmine22.What you describe has been a key feature of my SLE/secondary Sjorgen’s Syndrome diagnosis. I lost too many teeth and had constant gum and periodontal problems requiring antibiotics on many occasions.

I developed severe TMJ pain and had to wear a mouth guard to fix it. I have to clean my teeth immaculately twice a day and remove dentures for 12 hours to prevent sores from dentures.

I had constant sinusitis in the years leading to diagnosis, and took so many antibiotics it was worrying. But they were all linked, and it took an ENT surgeon, dentist and rheumatologist to fix it eventually.

These are all symptoms of Sjorgen’s Syndrome and receiving that diagnosis suddenly made my experiences understandable.

Sometimes my jaw pain requires muscle relaxants.

Wishing you all the best with the “rheumo” my friend. Good luck

[Jasmine22 in reply to Colonial-girl]

Thank you so much for taking the time to reply. My original rheumatologist thought that I had Sjogren’s Syndrome and I was meant to be having a lip biopsy before I moved. It’s so easy for them to keep telling me that everything is Fibromyalgia. My daughter and her husband are both consultants and hate how dismissive my doctor is. I’m hoping that something will show up in the bloods I’ve just had taken. Take care 🙂

[Colonial-girl]

Apparently rheumatologists study over one hundred types of RA alone. Then add in all the other misunderstood autoimmune diseases, and you wonder how rheumatology can cover our area of health! Why don’t we get sent to immunological specialists?

My Father was a medical practitioner and my Mum had lupus too. I still see the rheumatologist my Mum saw, an ancient fellow. Lots of experience no doubt.

But my lupus/Sjorgen’s journey has been a nightmare. I only found out he had diagnosed Secondary Sjorgen’s when I reminded him he hadn’t ordered blood tests for over 2 years. The pathology request stated the diagnosis!

So I am going to see if I can find a rheumo here in COVID riddled western Sydney who communicates better. “Second opinion “ type stuff.

But I completely understand why your daughter and husband have concerns for your health outcome. We need more advocacy and have to bloody assertive with our Doctors.😁

[MEGS53]

I also get this. My dentist says it relates to sinusitis 🤷‍♀️ She could be right as I do have severe rhinitis.

Take care - I hope it improves soon.

[Jasmine22 in reply to MEGS53]

Thank you. I don’t have any sinus issues so not really sure what’s going on. Take care 😊

[MEGS53 in reply to Jasmine22]

You too, xxx

[Bowenlady]

Hi, I too have TMJ pain, sore gums, creaking and popping sinuses. One day I woke up and looked like something from a vampire film. All my gums were hugely swollen and engorged with blood. They were very sore and the TMJ was painful both sides. I got an emergency appointment with the dentist who said it was dryness of my mouth shrinking the gums and was either the Sjogrens or the meds for my high blood pressure. It was very scary. I also have Lupus and fibromyalgia. At the moment my gums are hurting every time I eat. I know how you must be feeling. I hope you are able to get an answer soon. We are all different with this disease but the advice you get on this forum is so helpful. Good luck.

[Jasmine22 in reply to Bowenlady]

Thank you. Yes, it’s awful and just as you seem to think you have a little relief in one area, something else raises its ugly head. I hope you’re doing ok today 😊