Parotid Gland Pain and Eating

[ghostkiwi]

My parotid glands keep swelling up! They used to do it only every once in awhile and it was painful but manageable. A month or so ago I had some lemonade flavored coconut water(cause its supposed to be very hydrating) and I immediately regretted that decision. My glands had swollen up so much I couldn't even move my jaw enough to eat and the sight of food or drink just made it hurt even more and lasted for days. So I took everything sour out of my diet but then it would happen for anything spicy(I mean even a little bit of spice and would BURN my lips) and then anything tart or bitter. So I'm left with pretty bland food, but now it happens when ever I try to eat or drink and the more I eat or drink the more swollen my glands become and its so painful because the swelling is all instantaneous. I never thought the thought of food would cause pain!! I drink plenty before and during when I eat and just in general(to the point my friends find it to be very unhealthy, but I don't know what else to do), I only drink water at this point cause it hurts the least. Because eating is so painful and my glands are consistently swollen, I just eat one large meal and drink water all day and snack on bananas if I get hungry.

Does this happen to anyone else? If so, what do you do to prevent the pain and swelling?? I need to be able to eat raspberries. I'm too young to live without bacon AND chocolate!!

[Joe S.]

It seems to be a challenge we all face at some time. I have had some success with the mumps tones from my website helping. I added male testosterone tones and that helped also. With every bite of food I try to have a snall sip of fluid to help during chewing and swallowing. Some foods appear to be moist enough with out the sip.

I used to eat some spicy foods my tastes are now much more bland as the burning hurts.

[cccourt1942]

GKiwi:
    This is called sialadenitis.  What amazes me is you have this AFTER your SjS dx.  I learn something from EVERY post on this forum.  I suffered from this condition for over five years before my dx.  The ENT never directed me toward SjS as I never gave him any other symptom. It has nothing to do with your ability to swallow...or food being chewed.  It is the salivation itself causing the pain.  Your  saliva is compromised due to the disease.  Your saliva cannot pass through the parotid ducts (could be the other salivary gland ducts too) thus stopping up the gland  and keeping it from functioning properly.  You can do a jaw massage in the shape of a backward, upside down J.  Start at the jawbone under your ear and begin the motion.  You can find diagram online as well.  My doctor showed me how to do it.  This helps to move the thickened goop.  You can apply warm compresses to the area as well.  I said WARM.  I have burned myself more than once.  I required an antibiotic about every 2nd to 3rd attack.  At times you will see the term salivary stones used (that stop up the gland's duct) but my ENT said stones are fairly rare...and he called it "sludge."  He never realized it was the T cells in my parotid which were left due to the white cells gobbling the mucous in my body attributed to SjS!     There is a population of people who suffer this condition without SjS.

As to the burning lips, etc, this came about after several years of the above symptomatology and treatment for sialadenitis.  I was like you thinking it was something too spicy or too tart.  I had not stopped eating citrus, lemon candies, etc, as the ENT said to suck on such to force overproduction of saliva.  NONE of it helped.  The burning progressed to my tongue and oral cavity.  I began to have what I called "cottage cheese" mouth (actually on my palate) and never equated it to thrush.  I thought it was something from the dry mouth at night.  The tongue burning ramped up to a point I could not eat much of anything. Zero salt as salt burned as much as a habanero.  To this day no one has been able to explain to me what happens to the tongue when you have it. 

Fast forward to now:  My rheumy put me on low dose prednisone nearly two months ago.  Though I used a product called Orasoothe (avlbl at Amazon) for my tongue...which did calm it...it never healed it.  The prednisone has almost given me a normal mouth.  Well, as normal a mouth as someone my age (72) and with SjS can have.  You are probably too young to be on low dose prednisone.  A steroid burst might help you but it can't give you long term relief. 

During the time (before dx) I would go through a week or two every couple of months drinking water and sipping broth.  Anything I consumed which caused salivation would kill me.  I lost  a bunch of weight. 

You have two  major groups of glands which are attacked by Sjogren's.  They are your lacrimals and your salivaries.  Understanding what is happening helped me cope.  I suffered for 5 years with the glands, 30 years with the eyes, and THEN found out why the discomfort!  By that time almost all were hardened.  I have not produced a tear in over 10 years.   I had no idea.  Your early intervention may deter the disease.

btw:  You have already figured most of this out for yourself (that is, what is causing you the pain) as you say you have removed foods which are tart, bitter, and spicy.  ALL those foods cause hypersalivation!!  Are you on artificial saliva--pilocarpine, evoxac , or salagen?  What about Restasis?   Since you are diagnosed you likely are.  That will help the tongue, lips etc, but it will not HEAL the oral area.  Orasoothe is the best product I used during that time.  A dentist suggested it.

During these attacks I would think:  this is worse than childbirth!

Good luck..and Happy Easter!
Have a good week-end.
c3

[Poppy]

I have this problem also so I can sympathise with you. Thankfully I don't have the swelling but the pain is awful and it takes me off guard 'cause it doesn't seem to matter which type of food I eat and it doesn't happen every time I eat or drink, it just seems to happen out of the blue.

[ghostkiwi]

C3,
I'm not on restasis or any artificial saliva, but I have an ophthalmologist appointment and meeting my new rheumy in the next couple weeks to hopefully get prescribed something for the dryness.

[cccourt1942]

gkiwi:  you can get xylimelts for dry mouth OTC.  If you live in an area which does not have it readily available, you can order it from Amazon.  Also, I have had great success with Biotene Oral Balance Gel.  Just  a bit on your tongue can make you feel normal...for about 30 minutes.  Ha, ha.  I love it at night as I can use it without drinking water for my mouth...so less times to get up to pee! (this is before you get the meds that is)
ccc

[Sjocool]

I'm sorry, I can empathize. I'm currently experiencing the same pain and tenderness. Mine has caused my chin and left part of my face to feel numb and tingly for several days. I finally got a hold of my rheumatologist yesterday and he said it's probably from my gland pinching a nerve and back on prednisone I go..

[finallyadx]

ghostkiwi - hello and welcome. 

So sorry you are having gland pain and difficulty eating.  I take cevelimine (generic evoxac) and I love it.  It has made a world of difference for me with parotid swelling/facial pain and numbness.  You need a script for it from your rheumy.

I do use over the counter biotene products as well as xylimelts that help.  I am also one of those sjoggies who will suck on lemon drops and even lemon heads to reduce the pain.  I am not recommending the lemon heads  - very sour and can hurt or be painful for many with sjogrens but for some reason they help me from time to time.

I also use a heating pad I can throw in the microwave on the side of my face and jaw that bothers me - it reduces the pain and swelling for me.

I hope you can find some relief soon.

Sending positive thoughts your way!

Kim