Jaw pain

Morning all,

I don't have RA, I have ankylosing spondylitis and this seemed the best board to join there being no specific AS board on here.

My worst issue at the moment is jaw pain: last night it started again really severe pain that kept me awake much of the night. This morning was horrendous but I managed to get some cornflakes down me so I could take my pain meds. I take 1000mg naproxen daily and I am also on Cimzia.

The pain is always on the right side, it radiates from my lower jaw and I end up with earache, eye socket ache, headache, pain running down my neck, pain along the gum top and bottom of my mouth. It is a very sharp intense ache, not stabbing. I've been to the dentist numerous times and had multiple x-rays taken but nothing can be found. I've asked my rheumy if this is an AS symptom: she says no, although I have seen many others complain of jaw pain on FB AS pages. I've had a very expensive mouth guard made by the dentist that is not helping. My teeth are very crowded (thanks NHS dentistry of the 80s) and I have cracked all the enamel on that side of my mouth as I have been clenching my teeth at night, hence the mouthguard. My dentist says the clenching is causing the pain but is not offering any other solution than the guard and there seems little point in going back, paying yet another consultation fee, to be told that nothing else can be found. My last x-rays were in October.

I'm at my wits end. I've just driven my son to school in tears from the pain and in an hour I've got to take my daughter to a hospital appointment. I've swilled with salt water, applied heat pads. I see the hygienist regularly and he says I don't have gum disease. I've had this pain for over 4 years now - not every day, I do have periods where I am not troubled by it.

It's the most debilitating pain, far worse than any back or hip pain I get with the AS. Any advice gratefully received!

[oldtimer]

This doesn't sound like a joint problem!

Has anyone suggested trigeminal neuralgia?

[Hidden in reply to oldtimer]

No The rheumy didn't address the issue and the dentist has only ever said it is due to clenching. When I had the impressions done for the guard I could barely open my mouth and he said that was because the muscles were so tight. My jaw noticeably deviates to the right when I open my mouth. I think I'll have to see my GP surgery and see what they say...

[amberly87 in reply to Hidden]

We have the same issues with our jaw and I have the same issue opening my mouth at the dentist. It hurts so bad to open all the way.

[Hidden]

I have had trigeminal neuralgia in the past and it was painful. I now always remember to keep a gap between my back teeth during waking hrs. No clenching! Could you ask for a referral to the Dental Hospital to have a full assessment?

[Hidden in reply to Hidden]

I think I'll have to: I can't go on like this! My dentist kept saying I "had to stop clenching" and I replied "I'm doing it while asleep, I don't know I'm doing it!" I think I clench as when I turn over it is painful and difficult, so I literally grit my teeth - I've caught myself doing that when I've woken during the arduous process of turning over!

[Hidden in reply to Hidden]

Yes, I understand. I think the Dental Hospital is the way to go. All the best. it sounds miserable.

[Nessa28]

Hi lovely I also have AS I have had awful jaw pain managed to snap a back molar so I'm never sure if it's through clenching with the constant pain . I'm struggling at the moment with horrendous clavicle pain which is running up my neck into the jaw . The doctor I saw yesterday told me it's a major flair now but the tendons are also affected . Your mandible has a huge tendon for chewing which we all carry the weight of the world on our shoulders and ultimately in our jaw . Please go see your doctor I had to in the early days of this as I could barely open my mouth . I'm so sorry thinking of you 🤗🤗

[Hidden in reply to Nessa28]

Hello fellow ASer it's a crummy club for us both to belong to! I've made an appointment to see the GP and see how that goes...

My AS doesn't seem to flare, maybe I'm just in a permanent flare? Cimzia is my first biologic, I took it for 3 months, hospital kept cancelling my appointments so funding not applied for in time for repeat prescription, hiatus of a month, then I've had 6 weeks back on. I'm yet to see any difference and I definitely would not want to stop my naproxen!

How long have you had AS? I was diagnosed last October after 25 years of unexplained symptoms that had been written off as ME. Total fluke question from my GP set me on the path to rheumatology and correct diagnosis!

[Nessa28 in reply to Hidden]

Hi there it took 15 years to get a diagnosis , though looking at it I had some symptoms back as a teenager I just put down to sport injuries etc them I was tested for Ra when I was about 22 but was negative so just got on with it . My symptoms really picked up a pace in my 30's . I was told I had degenerative disc lumbar spine , then it was OA then infection of spine , lupus,ms then in my head so I just kept going truly thinking it was me and at work one morning I twisted my pelvis and from then on it was so many unnecessary procedures on facet joints and discs and nerve endings . Eventually when I could barely stand my doctor and the pains consultant decided to refer me to a rheumatologist December 2016 and he confirmed what it was so I can now say I have AS and now negative RA and OA so loving the gift that keeps giving lol . It is pants I haven't had a flair for 18 months but persevere with the biologic I'm on Humeria and it has been a miracle yep still get stiffness and pelvis locks up if sat down for to long but honestly it's been great . This forum has also been a life saver as it's really difficult to find women with as. Keep in touch hope your jaw frees up soon there are some marvellous exercises that help to release tension in the jaw I truly recommend them 🤗x

[amberly87]

jnmmum,

I have psoriatic arthritis, Psoriatic Spondylitis, Fibromyalgia, postherpetic trigeminal neuralgia, and chronic headaches/migraines.

I have ALWAYS had issues with my jaw/TMJ. I have issues with clenching and grinding, have had braces twice, and gotten several mouth guards, all of which I have chewed through. The pain is relentless and agonizing (all the time, but especially when it’s at its worst).

Years ago I saw a chiropractor who took X-Rays and asked if I ever had trauma to my teeth, which I haven’t. He said some of the nerves in my teeth are shriveled which you typically only see due to trauma. Then, a few days ago I read an article about a possible link between autoimmune disorders and dental issues (I’ll look for the link and if I can find it I’ll post it). A lot of the dental problems they believed could occur due to autoimmune issues were the exact ones I’ve had (although it didn’t say anything about shriveled nerves).

The symptoms I have with my jaw perfectly mirror the ones you have. I always thought it was stemming from tension as a result from my inflammation, which it may be. I’m preparing to see a pain specialist in a few days so I downloaded my chart from my rheumatologist and saw that he stated I have postherpetic trigeminal neuralgia as well. Upon researching it I found it can cause an electric shock pain in the teeth and jaw. Maybe ask your doctor about this.

There’s not a lot I have found to help it except heat packs, baths, and putting biofreeze on the area, but I receive Xeomin injections (a Botox like medication). I get it injected into my face and scalp for headaches, my muscles to prevent swelling and my jaw. I couldn’t believe how much it actually helps. It’s very expensive, but there’s a patient savings program and if you only need it for your jaw you wouldn’t need much at all. I receive 200 vials which is about $2000 (I don’t pay that with the savings program and insurance) but that’s enough for about 50 injection sites; if you only need two injections (one on each side) I’m sure it could cost you little to nothing. I highly recommend you talking to your doctor about getting these.

[Hidden in reply to amberly87]

Well I went to GP last weds who said trigeminal neuralgia and gave me amitriptyline to start with, felt crap all last week, lots of pain and couldn't do anything other than lie on sofa with hot water bottle pressed to my face. On Friday my very back molar on right bottom felt tender and like it was standing proud of the rest of my teeth, the Saturday I had same feeling in a tooth further towards the front of my mouth. Sunday, gum looks puffy around the very back molar and this morning nice big lump visible on my jawline. So I'm seeing the dentist in half an hour. Question is if he says tooth is infected was that the problem all along or have I had TN AND an infected tooth? I'm guessing if it's an infection it'll be antibiotics and no cimzia injection this week...

[amberly87]

Here’s the link about the connection between PsA & dental issues.

psoriatic-arthritis.com/cli...

[Hidden in reply to amberly87]

I'll take a look at that thank you. My teeth are bloody awful - courtesy of the terrible NHS treatment available in the 80s. They are very crowded so I was possibly always going to have problems as i got older!

[Ccrowlu]

I found out after I joined this group I didn’t have ra but everyone here is so supportive and nice still and they don’t mind me posting to the group. I think you’ll find lots of support and love here. ❤️❤️❤️❤️

[Hidden]

Hmmm, after my dental appointment I've been given antibiotics and also had an antibiotic injected into the gum but no inflammation of any note was visible on my x-ray, so I have to go back in next week to have another look when hopefully the antibiotics will have taken effect and I will be able to open my mouth a bit wider! It was difficult getting that x-ray thing in my gob!