Swollen Salivary Glands

[Jemima]

I totally agree on the steroids, but sadly for my Mum she'd be completely blind by now without them. She actually has steroid implants in both of her eyeballs at the moment I don't envy her one bit on that procedure!

Autoimmune diseases occur when our immune systems turn on our healthy tissue and cells - depending on which area of the body is attacked in error, that dictates which autoimmune disease it is. Often, blunting the whole immune system is the only way to stop the body self-attacking, but that leaves people vulnerable to illness and infection along the way. Not an appealing option at all!!

Perhaps if they can pin-point a mechanism to target in fibro, they may come up with something new to try - I think you're right that being overly hopeful does tend to set us up for disappointment!

I had to make a 2 day drive on my own through a cold and mountainous area in order to get home

That sounds like a real ordeal - I'm really glad you made it!

 

[sunkacola]

That sounds like a real ordeal - I'm really glad you made it!

Thanks. A couple times it was uncertain if I would, especially when I hit about 30 miles of solid icy snow on the highway. I know how to drive in those conditions, but that doesn't make it any fun.
And, of course, I collapsed completely when I got home.
I don't really want to do that again, but am planning another trip out there in November again so we shall see. Maybe the weather will be better this year.
I like driving through there a lot more in the summer, which I am about to do next week. Meaning I will be off the forum for about 3 weeks, because where I go has no internet. Vacation!

 

[Jemima]

Thanks. A couple times it was uncertain if I would, especially when I hit about 30 miles of solid icy snow on the highway. I know how to drive in those conditions, but that doesn't make it any fun.
And, of course, I collapsed completely when I got home.
I don't really want to do that again, but am planning another trip out there in November again so we shall see. Maybe the weather will be better this year.
I like driving through there a lot more in the summer, which I am about to do next week. Meaning I will be off the forum for about 3 weeks, because where I go has no internet. Vacation!

A vacation sounds like a fantastic idea, and something you absolutely deserve! We'll all keep the lights on here for you while you're gone

 

[ttoney1124]

I’ve had swollen glands, parotid & submandibular for going on 2 years. I’ve too been to a number of different specialist and still no resolution. They push it off as no big deal, although to me it’s a very big deal looking and feeling them everyday. They only say oh it must be part of your autoimmune disorders, like fibromyalgia or connective tissue disease. I’ve tried home remedies, nothing works!

 

[SugarcreekMama]

I've had swollen salivary glands since January. I've seen 3 different doctors and nobody seems to care enough to do something about it. No advice for you but I'm glad I'm not the only one. I'll wait with you to see if someone may have good info.

 

[milosmom]

Hi, I have never written anything on this furom but when I seen this thread I had to chime in. I was diagnosed with fibro over 10 years ago but had symptoms years before diagnoses. Ok this is going to sound I would always get sore throats off and on throughout the years, at least it felt like a sore throat when I would swallow and hurt when I talked. But I was noticing that when I was not dong either of those things it would still be hurting. So what it really was was glands on or under my tongue that would hurt all the time because my mothe is very small inside so my tongue is always rubbing against my teeth and that is what was causing the pain. It would get so bad that I did not even want to talk because it hurt so much when it did. An example is when my daughter got married I had a very hard time going around and talking to the guest and thanking them from comming. I basically did not talk much at all and felt guilty about it. People would ask what was wrong and I would tell them that my tongue was brushing against my teeth and it hurt and they would look at me like I had to heads. It was so painful and nothing would help with it. It also noticed that my glands in the front of my neck hurt too. This went on for a year and a half and I was so miserable. I felt like the sides of my tongue were completly raw from the rubbing and if you try to keep your tongue still it is basically impossible. I did go to a few doctors and they could not see anything and one doctor even told me there were know glands there. So since everyone thought I was just crazy I suffered with it. Ok here is the crazy part, I was on lithium for a few years and had gone months without getting blood work when I had switched doctors. I never realized how inportant it was to get it checked because it could cause problems with your thyroid.
Well that doctor was not that could so I looked around and found another one and I really like him. At my firsy appointment he gave me a perscription for blood work. the next apptointment I had was a month later. When I was there he looked at my blood work and said I needed to go to urgent care right away because my thyroid numbers were way off and he was extremly worried.
They did more blood work at urgent care and told me I had hypothyroidism and gave me a perscription for Levothyroxine, they started me at 75mg. I looked up all the syptoms and could not believe how many I had. I am now on 100mg.
when I started taking it I could not believe how much more energy I had. Sorry this post is so long but this is what I am getting at, all of a sudden the pain in my throat went completly away withen 3 days. I know this does not make any sense even to me it does not but I swear that it had to be connected to the hypothyroidism because absolutely nothing else had change as far as taking anything else.
So can anyone explain this to me? I could not find that symptom amoung all the other symptoms associated hypothyroidism.

 

[milosmom]

Sorry about the missing words and bad spelling. Because of my fibro fog I rushed through typing this before I forget what I wanted to say

 

[Jemima]

Hi milosmum,

You don't need to worry about typos here - we allllll get the fog factor!

I'm so sorry that you went through such a lasting ordeal - it's shocking that your doctors weren't monitoring you with regular blood work while on a prescription dose of lithium, and especially that they didn't think to check this when you experienced other health issues! I found the following described as possible hypothyroid symptoms on a dental website and in a 2014 hypothyroidism study:

• Macroglossia, which is "the abnormal enlargement of the tongue"
• Dysgeusia, which is "where a person's perception of taste is altered"
• Difficulties with swallowing
• Poor periodontal health, so impacting the structure around the mouth
• Delayed wound healing in the mouth

That sounds to me like it could all fit? I imagine that if you have fibromyalgia - which seems likely since you're here - that your FM could also have been exacerbating your discomfort. Although, I'm only guessing, as I'm certainly no expert. I'm sorry you haven't had better support through everything you've been dealing with, and I hope that isn't the case again in the future. Thank you for sharing your story!

 

[Jemima]

I’ve had swollen glands, parotid & submandibular for going on 2 years. I’ve too been to a number of different specialist and still no resolution. They push it off as no big deal, although to me it’s a very big deal looking and feeling them everyday. They only say oh it must be part of your autoimmune disorders, like fibromyalgia or connective tissue disease. I’ve tried home remedies, nothing works!

I've had swollen salivary glands since January. I've seen 3 different doctors and nobody seems to care enough to do something about it. No advice for you but I'm glad I'm not the only one. I'll wait with you to see if someone may have good info.

Did either of your doctors/specialists suggest testing for reactivated EBV? I'm really curious to find people who have pursued it in relation to fibro, and sadly lack the funds to make myself the guinea pig at the moment! I hope you both find relief soon.

 

[milosmom]

Thank you for taking the time to research that info for me and for responding to my post. I was diagnosed with fibro from my family doc and also by many other doctors that I was referred to. Been living with it for years and definitely understand and feel for all of you that are suffering with it also. I come and visit this site because know matter how long I have been dealing with it there are still times were I can not comprehend how it is possible to be this sick at times, and coming here reminds me that I am not alone and not going crazy.

 

[Jeans89]

Hi there. I'm not officially diagnosed with fibromyalgia but am suspicious of it or some other autoimmune disease (I'm a nurse and thought fibromyalgia WAS autoimmune until I read this thread lol). I was reading a fibro thread today and relating to a lot of symptoms: dry mouth, dry eyes, migrating aches/pains all over the place, numbness of scalp, GERD, intermittent throat pain/hoarseness.

It's been a long year of doctoring and chasing symptoms for me. I have a pleomorphic adenoma (benign salivary gland tumor) - so grateful it's benign! However, they're usually asymptomatic, and I have symptoms - intermittent ear/neck/throat/head pain, tinnitus, numbness - so they think something else is going on. My husband died of cancer, so I have this huge fear of that and find myself almost hoping I have an autoimmune disease instead.

It all started on the left side with ear/neck pain, what I thought was a growing lymph node, and 2 dental infections, but now on the right side I have some tenderness around the corner of the jaw and just in front of my ear. I'm getting occasional fullness in that ear now, too. I have pitting edema in my cheeks, and one tender (buccal node?) in each cheek.

An ENT friend has tried to comfort me by saying she doesn't think it's cancer but does suspect an autoimmune disease. Maybe Sjogren's? Ever since I had 2 molars extracted in July, it has felt like something's in my throat on the left when I swallow. I also get occasional warm red spots on my cheeks and under my jaw, often unilateral.

I'm particularly concerned about the pains that come and go in my head and neck. None of my symptoms are severe, and they're all intermittent, but they've persisted for months now this year. Just wondering (hoping) if anyone else relates to any of this. xoxo

 

[Jeans89]

I've had swollen salivary glands since January. I've seen 2 doctors but nobody will help me figure out why they are swollen or help me to know what to do about them. I had a scope done and a CT done and both of those tests confirm that there is swelling in the glands and surrounding tissue. I was told that it's "just your fibro" and was dismissed. Has anyone else had salivary gland swelling?

Do you have any other symptoms besides the swelling?

 

[Jeans89]

I would have them check for sjogren's syndrome. I had an abscess in one of my saliva glands and had to have surgery. All tests came back negative for me to have it, but that is definitely something to check on. Dry mouth and dry eyes are among other symptoms.

May I ask what all your symptoms were with that? I have a pleomorphic adenoma on the left, which is usually asymptomatic, but I have symptoms such as throat/neck/ear/head pains, tinnitus, scalp numbness, so they think something else is going on, too. I have tenderness on the right side around my ear/jaw now and wonder if I have something autoimmune attacking my parotids.

 

[Jemima]

Hi there. I'm not officially diagnosed with fibromyalgia but am suspicious of it or some other autoimmune disease (I'm a nurse and thought fibromyalgia WAS autoimmune until I read this thread lol). I was reading a fibro thread today and relating to a lot of symptoms: dry mouth, dry eyes, migrating aches/pains all over the place, numbness of scalp, GERD, intermittent throat pain/hoarseness.

It's been a long year of doctoring and chasing symptoms for me. I have a pleomorphic adenoma (benign salivary gland tumor) - so grateful it's benign! However, they're usually asymptomatic, and I have symptoms - intermittent ear/neck/throat/head pain, tinnitus, numbness - so they think something else is going on. My husband died of cancer, so I have this huge fear of that and find myself almost hoping I have an autoimmune disease instead.

It all started on the left side with ear/neck pain, what I thought was a growing lymph node, and 2 dental infections, but now on the right side I have some tenderness around the corner of the jaw and just in front of my ear. I'm getting occasional fullness in that ear now, too. I have pitting edema in my cheeks, and one tender (buccal node?) in each cheek.

An ENT friend has tried to comfort me by saying she doesn't think it's cancer but does suspect an autoimmune disease. Maybe Sjogren's? Ever since I had 2 molars extracted in July, it has felt like something's in my throat on the left when I swallow. I also get occasional warm red spots on my cheeks and under my jaw, often unilateral.

I'm particularly concerned about the pains that come and go in my head and neck. None of my symptoms are severe, and they're all intermittent, but they've persisted for months now this year. Just wondering (hoping) if anyone else relates to any of this. xoxo

Hi Jeans89,

Welcome here! Yes, fibro is a funny one - the consensus was that it wasn't autoimmune until earlier this year, when new research swung things the other way!

Do you have symptoms in the rest of your body? You mentioned aches/pains all over the place, but dominantly talk about head and neck symptoms, so I thought best to clarify! The hallmark of fibro is that it manifests body-wide, although symptoms can go through phases of being more acute in certain areas. In terms of similarities, I'm sure there will be people here who can weigh in having experienced symptoms close to what you're describing.

I wonder if you've had your thyroid checked recently, and whether there could also be a lingering infection in your jaw after having your teeth removed, or your body might be battling a lingering viral infection? Making things all the murkier, fibromyalgia can impact thyroid, and also triggers very similar symptoms to Sjogrens in some sufferers. If you Google "Autoimmunity and Neuroinflammation in Fibromyalgia" you'll find a very informative article on Verywell Health that goes into these overlapping issues.

If you are experiencing all of these things and body-wide pains, then fibro is a potential possibility to explore, but I wouldn't stop looking for other causes in case there is something else going on that needs treatment. Ideally, you could do with working through the diagnostic process with a doctor who can help you rule out anything else, and diagnose fibro if that's where all signs point. Well done for working while dealing with what you're experiencing - looking after others while struggling yourself is worthy of praise. I really hope you get to the bottom of things soon, and begin to feel better. Feel free to keep asking questions here - we all know what it feels like to go on feeling unwell for months, so will understand if you need to vent!

 

[SugarcreekMama]

Do you have any other symptoms besides the swelling?

Aside from my typically long list of fibro symptoms? (Dx with FMS/chronic fatigue in 2016 then rediagnosed earlier this year) When the throat pain is severe I feel a deep ache and a fullness that is tender to the touch(even from the outside) all around the throat area and into my neck. My esophagus doesn't usually hurt (think sore, raw throat before getting a cold...I don't have that px) An all over my head (like my brain is pressing on my skull from the inside out) headache usually accompanies the throat ache. I tested negative for Sjogrens disease but my white blood cells were significantly higher than normal. Nobody seemed to be concerned and I was told I didn't need to come back. I've read that Fibromyalgia can mimic Sjogrens. I also have dry throat, dry eyes, and severely dry lips/skin even though I drink copius amounts of herbal tea or water. Does this help at all?