First bite pain

[1985mum]

Hello again,

I don't know whether to post his here or go over to the sjogrens forum...

As part of my ongoing research I am continually frustrated by the lack of information on First Bite Pain. I have found a small amount of info relating to it being a sign of malignancy (!!) but nothing in connection with auto immune disease.

I know there are a few sjogrens sufferers on here and I wanted to come and ask this question of people I know rather than a new lot of people I don't know.

Does anyone get First Bite Pain? This is the shooting pain under the lower jaw when you take the (quite literally) first bite of a meal or snack. It is one of the quite prominent symptoms I have that seems to keep getting overlooked.

P>S> I have my appointment with wonderful new GP end of July. I'm frantically getting in as much research as I can before then.

[Barnclown]

Hello 1985mum...am intrigued by your post because I've never heard of this symptom having a specific name...but it could maybe be related to something I've experienced

when I had only just had my infant onset lupus re-diagnosed 5-6 years ago, one of my big probs was osteomyelitis in my left side upper jawbone related to a bad molar situation spreading into the bone itself...this chronic mess was mainly due to my high rate of loss of bone density + my early onset primary immunodeficiency + my lupus not being taken in to account re 20 years of a failed root canal job on a top molar going ignored by my dentist. this situation had come to a head at exactly the same time my multisystem degeneration had led to investigations by rheumatology.

So, during that molar crisis I had what I'd describe as first bite sensations: this felt like the bones of my jaw experiencing a simultaneous shooting & aching pain along their full length from joint to joint on both sides involving the top & bottom jaw, and I felt this when I bit down on anything...especially at the first bite. The pain also included a weird creaking sensation in my upper & lower jawbone as I bit down. The aching really hurt...my jawbone itself seemed to feel weak throughout its length (not the jawbone joint, rather the bone itself)

I was so stressed by the way loads of awful spooky symptoms all over my body had become so bad, that this jawbone & molar crisis seemed just one more horrible thing. So I tried hard to kind of take this bite pain thing in my stride, figuring it would go away once the osteomyelitis treatment was over (extraction of the molar + implanting a replacement + 5 months on daily high dose oral antibiotics) BUT I too read that the first bite etc symptoms I was experiencing can indicate malignancy. During all this jawbone thing, I was being investigated by a Multidiscipline team: oral surgery + maxillofacial + ENT, with my rheumatology lupus clinic aware of how things were going & involved from a distance. My GP had warned me that investigations in this part of the body are complex: she was proven right!

Fortunately, what I guess could've sort of been my version of first bite symptoms did gradually fade away during that year of oral surgery + osteomyelitis treatment + beginning in oral systemic lupus meds. Phew. But, 5 years on, rheumatology + immunology + my oral surgeon have told me that, even with the CT scans I had during the osteomyelitis thing, it's v hard to distinguish between osteomyelitis, osteonecrosis & malignancy in jawbones. So, to this day, although we tend to believe I was suffering from osteomyelitis, there is a question mark over the diagnosis because no biopsy was performed...and I have a history of malignancy going back into the 1990s

So, I'm very interested & glad you posted...I'll be following the discussion

Wishing you all the best figuring your version of this out

🍀🍀🍀🍀 coco

PS I too have been managing sjogrens affecting my mouth inside & out for many years

[tcogb]

I used to get this constantly but now only infrequently. Angonising shooting pain from just below my ear along the jawline on both sides when I first ate something. My doctors also didn't take much notice of this, probably as I had so much else going on at the time as it was when I was first diagnosed with MCTD overlapping with SLE (the Drs have now settled on a diagnosis of UCTD and I have Raynauds. I have the antibody associated with Sjogrens but not particular symptoms for it) At one point I also had problems opening my mouth. Just woke up one morning, tried to brush my teeth and found I could hardly open my mouth. Doctor referred me to dentist, dentist referred me to dental hospital consultant who decided after x rays that there were some degenerative changes in the jaw, probably down to the inflammatory arthritis affecting my joints including the jaw. After a while of being on Mycophenolate, Hydroxy etc my symptoms are now well under control thankfully and the shooting pain on eating doesn't happen very often. I always associated the pain with the saliva glands which I tried to explain to the doctors which would fit in with Sjogrens perhaps? But as I said they weren't particularly interested in that symptom despite the fact it was so painful it made me flinch and clutch my neck which was a bit alarming for others if I was eating out! 😳😳

[Hidden in reply to tcogb]

Hi - sorry you are suffering with this and there's no interest from your doctors or plans to investigate yet.

I don't have this type of pain fortunately. However I believe some with RA might suffer from exactly the same problem because this disease affects the jaw joints often and RA and Sjogrens also go hand in hand. So you may get extra responses if you post this on the NRAS HealthUnlocked too.

[ExtremeDuvetDaze]

Hi 1985mum, I've never heard of Firstbite pain, this is interesting as I have just been diagnosed with a 'mild ' form of Lupus, ( I was diagnosed with UCTD in 2002) I'm guessing mild because I don't have positive ds DNA but do have positive ANA anti centromere at 1:640 titre and positive Anti Ro, my GP was puzzled by the term 'mild'! I also have fibromyalgia and other things going on but over the last few months I've been getting this searing pain underneath my tongue and into my neck under my jawbone that's excruciating sometimes when I eat and sometimes for no reason, it only lasts for maybe 15 seconds and is gone and then sometimes when I start to eat I experience pain in my jaw on both sides that is really bad and I find myself clutching my jaw until it subsides, this last for just seconds too but again excruciating while it's happening, it's really unpleasant, it doesn't happen all the time but has been more frequent lately. My GP said it was really important to tell the rheumatologist about this symptom, I also have dry eyes but they are not too bothersome most of the time and I use natural tears. I mentioned this to the rheumatologist on Monday ( who I'm already not too keen on) his reaction was ' you have my sympathy but there's nothing I can do, you've probably got a stone in your saliva duct' ! I know Sjorgren's can overlap which is why I thought it important to mention it but he was very dismissive and wasn't interested at all! 😫😫

[1985mum]

Thanks again everyone. The description of it being under the tongue rather than the jaw is definitely more accurate. And it's a stinging pain when food hits tongue (some times it's even just before food hits tongue almost in anticipation) that at times makes you clutch at your jaw like you've been attacked!

It seems logical to me that it would be to do with Sjogren's due to dry saliva glands.

Sometimes I dream of having a computer chip (like modern cars) that we can plug in and diagnose when an issue arises!! LOL

[bones-bones]

Could be blocked salivary glands....quite common in Sjogrens. You can massage the parotid gland to unblock the gland. Is the pain under your tongue needle sharp ? That is a gland too. Sometime sucking something like an acid drop can help too.