First Bite Pain

[1985mum]

Hello, I'm hoping someone here can help with my question. I am a frequent on the HU LUPUS forum but I thought I'd pop across here to hopefully get an answer.

I have a LOT of ongoing symptoms that indicate an autoimmune and I'm currently undergoing investigation and possible diagnosis.

One of my ongoing and more prominent symptoms is First Bite Pain. This is characterised by a sharp shooting pain that usually only lasts seconds when you put the first mouthful of a meal or snack in your mouth. It is often painful enough to make you clutch at your jaw like you've been hit!

My problem is that whenever I mention it to my doctors it keeps getting brushed off. The only information I can find online about it is that it is very common with people who have had oral trauma (e.g. surgery, infections, radiation for head and neck cancer etc.) but in the event where there is no trauma it is highly indicative of malignancy!

Now, I have had a reasonably thorough oncological workup due to other symptoms that raised reg rags at first and as far as we know I have no oral malignancy.

My question is whether anyone on here with Sjogren's has come across this symptom?

It seems logical to me that it would be associated with dry saliva glands but I can find any medical material linking the two (I can't really find any definite medical material on First bite pain at all!)

I would much appreciate any answers I can get.

XOX

[Megansheart]

No I haven't had that symptom when eating however you describe it well!

The closest I have had to that is eg. the other day I had just arrived in Bali and it was hot and humid. At the concierge desk they asked if I wanted a drink. I said something "with a lemony base" and they went to a lot of trouble making (I think) almost straight lemon juice with some syrup ...........well the first sip and it felt like you describe....it went right through my jaw. It settled quickly. Thankfully it only happened on the first sip.

I hope you can find some answers!

[weathervane]

Hi there

I have similar probelm when salivary gland blocks up and swells. Had dye test which shows left on damaged all zigzagged not smooth . Check Sjögren's syndrome foundation site for patient info sheet on how to massage gland. I have got into habit of doing it several times a day- it really has helped. Was told for years that I was clenching my jaws at night !!! Hope this helps😃

[1985mum]

Thanks for your replies. I am on a continual research mission to find out more about what is wrong with me. It seems that people with auto-immune disease do have some experience with this symptom.

[Roopavati]

Hi I have an experience of first bite pain

[Roopavati]

Hi I've had lots of moments of first bite pain. But I haven't had this experience as much in the last year. About 18 months ago I was diagnosed with Sjogrens. I think I had symtoms a lot earlier than that but thought I must have an infection that would go away eventually. About 12 months ago I had a health crisis - low B12, fatigue, high blood pressure, heart beat out of wack, sore eyes, painful mouth, swollen glands, loss of weight and regular first bite pain. This happened especially when I was about to eat an avocado sandwich with tomato (my favourite). The pain was intense - drop the sandwich, hold the mouth and be still for a minute or so until the pain disolved. This was part my motivation to see a dr. Eventually the diagnosis. Now another 12 months down the track that pain has diminished. I produce very little saliva now, my glands swell from time to time but generally less frequently. I don't know if this is a result of the saliva glands giving up trying!

I have become a regular saliva gland massager! This helps if the glands are swollen. I do my neck exercises daily as a way to stimulate the area. I take a spoonful of flaxoil daily - to lubricate the mouth to stomach area, I clean my teeth after every eating time, I eat wet and soft foods. I wash my nasel passages (a yoga pracice called netti) with salty water daily (well close to daily). On very few occasions now I have that sharp pain you refer too. I'm not sure if these maintanence practises are helping or if the disease is just changing. I think the massage of the glands is more effective for me. Good luck

[1985mum in reply to Roopavati]

Thank you for replying. Are you on any medication for the Sjogren's?

Interestingly, I went to get my eyes tested yesterday and the optometrist mentioned that I have mildly dry eyes and asked me about my saliva glands. When I told him about the first bite pain he suggested that I get further testing for Sjogren's. I have never noticed or had significant problems with my eyes but he picked it up!!

[weathervane in reply to Roopavati]

Hi roopavati

Noticed you mentioned neck exercises , I do the salivary gland massage and I would be interested in doing neck exercise as well . I know the massage does work as I regularly have probelms so keep at at!!😀

[fbsyndrome]

Hi, have you find anything yet? I'm searching for the same thing since 2005, could find nothing yet. Additionally to your symptoms, i am having same intense pain in my eyes if anything like smoke catches them.

fbsyndrome.blogspot.com/201...

[1985mum in reply to fbsyndrome]

No diagnosis yet but it's looking strongly like sjogrens.

Thanks for.the link.