Swollen Salivary Glands

SugarcreekMama

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DX FIBRO
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5/2016
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WI
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?
 

Jemima

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Hmmm, I'm definitely no expert, but am struck by one thought. Fibro has been tied to chronic and reoccurring Epstein Barr virus - aka glandular fever or mono.

Many believe EBV is the root cause of at least a proportion of fibro cases, although it's a bit of a chicken and egg scenario as far as I've gathered. I.e. does EBV cause fibro, or does something else to do with fibro allow EBV to take hold again? I don't think the science is quite there yet.

The majority people (90+% globally) are carriers of EBV - it's highly contagious, but most of us catch it as kids and then our immune systems get it in check and holds it dormant for the rest of our lives.

I've been considering getting tested for the right EBV antibodies (to indicate that the virus is active) during a flare - but this is something that's a bit of a challenge to arrange during covid times! If you search for EBV here in the forum, you'll find quite a bit of discussion. Might be worth looking into.

Good luck - I'd be keen to hear if you figure anything out!
 

sunkacola

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I often wake up with swollen glands in my throat, the ones that are swollen when you have an upper respiratory infection or the 'flu. (I don't know what glands those are). This is accompanied by a sore throat, which always improves during the morning, and is usually gone within two to three hours. I never have known what causes this, but it never happened before I developed Fibro.
 

Jemima

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I often wake up with swollen glands in my throat, the ones that are swollen when you have an upper respiratory infection or the 'flu. (I don't know what glands those are). This is accompanied by a sore throat, which always improves during the morning, and is usually gone within two to three hours. I never have known what causes this, but it never happened before I developed Fibro.
You've got the submandibular glands tucked under your jaw on either side, and then the parotid glands that you can feel (when they're swollen) more between the end of your jaw and just below the bottom of your ears. They are two of the sets of salivary glands. According to the Cleveland Clinic website, when these are swollen it is usually caused by a virus, a bacterial infection, or oral health issues. It's also associated with dry mouth, which is interesting considering we were talking about that yesterday! Swollen glands and sore throat are also symptoms of EBV, but of course it could be something else too.
 

sunkacola

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The fact that it comes and goes, and only happens a few times a month usually, is what is perplexing. If it were an infection or a virus of any kind it wouldn't just go away in a couple of hours and not come back again for days or even a week or more. At least, I wouldn't think so, although I am no expert. I am going to mention it the next time I am in a doctor's office, though. Which will be a while, as I only go to a doctor (actually a NP) once a year. :)
 

Jemima

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The fact that it comes and goes, and only happens a few times a month usually, is what is perplexing. If it were an infection or a virus of any kind it wouldn't just go away in a couple of hours and not come back again for days or even a week or more. At least, I wouldn't think so, although I am no expert. I am going to mention it the next time I am in a doctor's office, though. Which will be a while, as I only go to a doctor (actually a NP) once a year. :)
Perhaps try to track if it aligns with anything that might be impacting your immune system, like doing a bit more, or getting a worse night's sleep. If your immune system is in an ongoing wrestling match with a virus, it would make sense that the virus might get an advantage every time your body's resources dipped, before swinging back again. Of course, it's so tricky to know - all sorts of different factors could be in play.

Love the once a year policy!
 

sunkacola

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Yep, I have tried to track it, and it is never associated with anything in particular that I have been able to put my finger on so far.
Of course, tracking it 100% reliably is not easy since I never know what day I will wake up with it and I may not remember every single thing I ate or did the day before, so I could be missing something. It's tricky, for sure.

I will mention it to my medical professional, though, and I may ask her to test me for the presence of any virus or bacteria that could cause it.
 

Kittykat12

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I often wake up with swollen glands in my throat, the ones that are swollen when you have an upper respiratory infection or the 'flu. (I don't know what glands those are). This is accompanied by a sore throat, which always improves during the morning, and is usually gone within two to three hours. I never have known what causes this, but it never happened before I developed Fibro.
Me too nearly every morning x
 

TJB

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Hi,
I suffer considerably with these gland problems. Like you there is no rhythm or reason for.
I am diagnosed with both Fibromyalgia and Chronic Fatigue Syndrome (diagnosed separately but some two years apart, CFS first). Obviously there is a cross over.
Ive had lots of tests on the glands, no diagnosis, just put down to FIBRO and CFS, but it does concern me.
I suffered Glandular Fever at 17, then major stress at 45 (over several years). No idea if that’s contributing.
Often my glands feels uncomfortable, even without swelling. Under my tongue the gland areas go red and swell a little too. Under chin and jaw gets on/off swollen, very uncomfortable, with that come the fatigue.
Of course it’s all too easy for dr’s to put everything down to Fybro/CFS.
Im told that most important if you notice a defined lump you should be more concerned 🤔.
x
 

CDHR

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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.
 

Jemima

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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.
A lot of overlapping symptoms with fibro there, and it says it tends to co-occur with other autoimmune diseases - which as of last week we may be able to consider fibro to be... The plot thickens :rolleyes:
 

sunkacola

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I am very interested in the research being done on FM being possibly an autoimmune disorder. I read in one article that if they determine that FM is an autoimmune disorder it will pave the way for effective treatments to be developed and employed. And, it would also tend to remove the stigmas that still surround FM.
 

Jemima

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I am very interested in the research being done on FM being possibly an autoimmune disorder. I read in one article that if they determine that FM is an autoimmune disorder it will pave the way for effective treatments to be developed and employed. And, it would also tend to remove the stigmas that still surround FM.
I read up a bunch on this yesterday, and am feeling pretty mixed about the autoimmune development! On the one hand, better understanding of what we're dealing with would be immense, and - particularly if they can develop a test off the back of this - the relief of stigma and validation that this could mean for fibro sufferers will certainly be welcome.

On the other hand, autoimmune diseases are notoriously difficult to treat, and are generally considered impossible to cure. Many are managed with steroids and anti-inflammatory medications, or immune suppressants like chemotherapy drugs. My mother has a rare autoimmune disease called birdshot chorioretinopathy that is gradually blinding her, and she's been running this gamut for some time now with a range of unwelcome impacts.

My understanding is that steroids have already been tested quite a bit for fibro, with not great results - and the side effects are grim with lasting consequences. I suspect we have to hold out hope for some entirely new treatment developments, even if the autoimmune connection sends research in new directions. Here's hoping!
 

Angiejane

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One of my reoccurring issues is painful glands. The glands start first, then settle then it's joint pain. It's like clockwork for me during a flair up. It's always puzzled me, it's almost like you'll come down with a cold or virus but nothing ever comes of it. No swelling , just painful glands, worse in evening.
 

sunkacola

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I read up a bunch on this yesterday, and am feeling pretty mixed about the autoimmune development! On the one hand, better understanding of what we're dealing with would be immense, and - particularly if they can develop a test off the back of this - the relief of stigma and validation that this could mean for fibro sufferers will certainly be welcome.

On the other hand, autoimmune diseases are notoriously difficult to treat, and are generally considered impossible to cure. Many are managed with steroids and anti-inflammatory medications, or immune suppressants like chemotherapy drugs. My mother has a rare autoimmune disease called birdshot chorioretinopathy that is gradually blinding her, and she's been running this gamut for some time now with a range of unwelcome impacts.

My understanding is that steroids have already been tested quite a bit for fibro, with not great results - and the side effects are grim with lasting consequences. I suspect we have to hold out hope for some entirely new treatment developments, even if the autoimmune connection sends research in new directions. Here's hoping!
Well, since there's no cure for FM, I suppose as far as that goes we won't be any worse off. :)

I always very strongly advise against the use of steroids under any circumstances. They are not good, period. I do not permit them to be used on me.
Having said that, I will say that I became profoundly ill in November of 2019 (I now think I may have had Covid). I had to make a 2 day drive on my own through a cold and mountainous area in order to get home, and I had to get home. I went to Urgent Care and allowed them to give me a massive steroid injection, which resulted in my being able to make the drive. But when I got home I was in far worse shape than before and I stayed extremely ill for 2 months, and coughed for another 6 weeks or so after that. Steroids solve nothing and will only makes things worse eventually.

Only under absolute necessity or emergency circumstances should anyone permit steroids to enter their body.

I cannot see how immune suppressers could ever be good for any living body. So it is my wish that if they do find that FM is an autoimmune disorder, they won't immediately rush to try to treat it in bad ways like that.

I personally do not practice hope because it doesn't work for me. But I always keep my mind open to the possibility that things could change just around the next corner, and it could be a good change as easily as a bad one. Eventually everything changes. With medical issues there are usually changes for the better over time, so there's no reason not to believe that some day this will be better treated by the medical establishment as well.
 
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