Hi everyone. I know that issues with the parotid glands are common in SS, but was wondering if anyone has had any issues with their sublingual or submandibular glands. I have had bilateral, firm swelling on the floor of my mouth (I'm guessing those are my sublingual glands) for several months now but my dentist has not detected any stones. They definitely become firmer after eating and when my dry mouth is in overdrive.
That's how my dry mouth started- I had sharp pain after eating, and aching all the time, plus very swollen so a stone was suspected, but none ever found. I still get aching, but not the sharp pain, and my dry mouth has got progressively worse. It's always been worse one side though, whereas I think auto-immune diseases are generally both sides?
Any ducted gland is likely to have a problem. You may try something as simple as a lemon head after you eat to stimulate them.
One of my first symptoms many years ago was swelling and pain in the parotid glands. I was told not to eat anything containing acid, i.e. vinegar & lemon juice etc.. This worked for me and I still avoid these foods.
I don't know anything about your problem glands but I thought that maybe avoiding acid might work for those glands as well as the parotid glands. I hope it might.
Good luck
My very first symptom was swelling in my submandibular lymph nodes. Unfortunately they've stayed around the same size for about 3 years now. Mine are palpable and soft and have been checked with ultrasound by my ENT (most recent appt was a week ago). Swollen glands are very common with SS patients and they may go up and down, but it's always a good idea to get them checked just to make sure everything is okay.
Ouchie, so sorry to hear you are having problems! My first symptoms for years were pains in the submandibular glands. It would happen when I would have sweet things and then smile, so I just told my friends not to tell jokes when I ate candy! But eventually it got so painful that I couldn’t eat anything for days on end. That is how I got diagnosed actually. Went to the hospital, got an ultrasound, and it’s all history from there. Pretty much my submandibular ones are firm all the time and have been for years.
So you aren’t alone. And, you can live with it. And there are things you can do to help! As the others said, avoiding foods that trigger it helps, like acidic foods (salt and vinegar chips are my fave, but they bug my saviour glands so much :c), but what triggers you may be different. Listen to your body. You can also massage, or “milk” your salivary glands, to try and get saliva out past any blockage that inflammation might be causing. It seems really weird, and can be tender, but I have found it helps a lot. Here is a guide from sjogrens.com in pdf form showing you how (sorry it is kinda crappy): http://www.sjogrens.org/files/brochures/Salivary_Glands_Massage.pdf
Good luck friend. 
Thank you for the responses. I’m going to make an appointment with my ENT to check them out.
Well, I saw my ENT about my firm, salivary glands and he didn't seem overly concerned. He diagnosed me with sialoadenitis. I hate to question experts, but I'm really worried that these glands stay firm 24/7. They due fluctuate in size when I eat or apply heat to them, but they're always firm.
Kerrikles, you mentioned that yours have been firm for years. Other than ultrasound, has your doctor performed any other tests (i.e biopsy) or imaging of your gland to verify that the cause is benign?
Oh my, I forgot about this support group for a while. I don’t know if this will help you now, but my doctor did an ultrasound to see what was going on. It determined that it was a lot of inflammation but no stones or anything. Nothing else though, no other tests. But my swelling has gone down with antibiotics when needed and milking the glands, as shown in the previous pdf. I have had a couple infections in them, and sometimes when they get really painful with the swelling then milking them gets a bunch of pus in the mouth which is… exactly as horrible as it sounds. But it does help.
Dear Kerrikles,
I never saw a doc about this.
The glands in my mouth were swollen and painful (esp where saliva exits under the tongue). It popped into my head that I could massage the glands. Gently is they key word here. Felt and looked like some crystals were in there. So I continued massaging them, drank lotsa water with food and without. While this didn't cure my dry mouth, it opened the glands so that the salagen (stimulates saliva --pill) worked. Since then, no mumbling in the morning.You got to hold on.
Sorry about the italics, it wouldn't turn off.
You got to hold on.
I have. Please see my answer on Lipiflow procedure for dry eyes.
@USAgurl This is the document I was referencing, I included it in my first post. http://www.sjogrens.org/files/brochures/Salivary_Glands_Massage.pdf
Thank you.
Lemon heads are a good alternative to "massage" SERIOUSLY. These gland issues are part and parcel with SS. FWIW I have had some removed, as well as in my armpits. and don't miss them a bit. The savings on deodorant having to only treat one pit have been great, although it will take a while to recoup the expense. Once able to win our annual watermelon seed spitting contest. I am now consistently last place a small price to pay.
I'm not (well a little) making light of this. We just have to keep getting on sometimes...... We do what works for us.
Thank you!
An earlier post commented that they hate to question the experts but they are very concerned. I know some docs don't have a great bedside manner but they are there to help you. Ask the question. Its definitely part of advocating for yourself. If you need, phrase it as "I want to make sure I understand you correctly…." with "so that's why this symptom is happening?" and also when can you expect it to resolve. Its asking for clarification, not questioning their judgement. I ask and ask again if I am concerned and I've had docs actually adjust their train of thought because of the questions.