Swollen Salivary Glands
- Thread starter SugarcreekMama
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SugarcreekMama
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Thank you. Having chronic illnesses is a lonely, discouraging adventure nobody wants to experience. It's nice to have a group of people (from all over the world!) who understands what it feels like. We don't have to fake it here. So often I find those who don't have fibro (or any other chronic illness) aren't interested in the everyday struggles. They can't see anything wrong so they don't believe anything is wrong. Add in the wacky, random things that happen and I sound certifiably nuts. Lots of time alone on this journey.
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I heartily agree on all counts. Sometimes, I think that people don't engage because it's so far out of their comfort zones, and although it would obviously be preferable that all of us lots' comfort zones weren't as stretched as they are, it does give us the power to step into other people's experiences and empathise in a bigger way - a bit of a super-power, I recon. Anyway, credit for the well-earned warrior woman status - and glad to be here with you!
Hi, Jemima - thank you so much for responding.
I have aches/pains that migrate all over. For a while it was my elbows, L>R, ached and tender to touch. Sometimes under my ribs, unilateral or bilateral. The back of my right upper arm/shoulder hurt for a while. My left shoulder. My right abdomen, up and down like my ascending colon. I cramp more but have a uterine fibroid and am perimenopausal. In March 2020 my back went out, which it has a handful of times in my adult life, and that time was the worst. SO painful, and the pain lasted forever. Seemed odd to me. MRI didn't show anything - I was delayed getting to a dr because of Covid, so if there was a displacement, it was corrected by then, yet I still had pain. I seem to have unstable SI joints. It went out a couple weeks ago, not as bad, but is still hurting a fair amount now, R>L, and my right groin hurts at times, and up over my right hip. That could be a totally different thing, Idk. In June it "went out" or I pulled something up higher in my back, and I had lingering pain around my left shoulder blade that was new/different and worried me. Maybe I just have osteoarthritis. My peptide IgG came back normal, although I know that's not 100% for RA.
US/CT of my thyroid and all labs have come back normal.
Re my teeth - a top molar had crumbled out 3-4 years ago, and long story but I delayed getting the roots out. Dumb, I know. It was infected but I rinsed with peroxide, etc., and it quit hurting, and I just put it off. Those roots were infected when they came out. And the bottom molar had chipped around 3 years ago, too, and I just one day noticed a huge cavity in it earlier this year. So those were significant infections.
The head/neck symptoms are new. I guess I've had chronic environmental allergies and h/o sinus infections and frequently get what I call a "heavy head" feeling, like a heaviness/pressure in my forehead/eyes/cheeks. Sometimes my upper jaw aches. But the left ear/neck pain were new this year, and it sure seemed reasonable to think that it was related to the dental infections. But the teeth came out, and the pain persisted, and then spread. The left side of my jaw clicks when I close it, and when I open my mouth I hear air in my ear on the right side.
My skull aches and is tender somewhat randomly, left, right, usually posterior, sometimes symmetrical/bilateral, lower skull behind ears usually.
I started getting weird numbness, too - first episodes under my jaw all across, then across the base of my skull, then on my crown, and lately on the top of my head and forehead. My cheeks aren't huge but I'd say have some swelling in them.
And then the feeling in the left side of my throat when I swallow - that wasn't there until after the teeth extractions. And it persists, and idk why. A week or two ago all the symptoms lessened a lot, and I was feeling more relaxed, thinking it would just resolve itself. But then it worsened again. Today I have a dull frontal headache that developed AFTER I took 800mg of ibuprofen.
I feel like I'm rambling, sorry. I'm just worried because the pleomorphic adenoma on the left is small, so there's a little bigger chance of error on the FNA, although all the drs seem confident in that report. They're usually asymptomatic, so I started worrying about cancer. But I did read that when there's pain, it's frequently due to autoimmune disorders. Guess I just wanted to hear someone else say they have had bilateral parotid issues (swelling/tumors) WITH symptoms and are fine, no cancer. I thought surely parotid cancer would just attack one side, but it can attack both, so again, I worry.
My gosh, this is long. So sorry. I've been so anxious about it. I've been listening to some healing meditations, and that has helped my anxiety a lot. Or was anyway, but the last couple days, it's been hard to reign in. I've had a ton of medical tests since March - colonoscopy (one precancerous polyp removed), EGD (polyps/eosinophils which seemed to resolve), abd/pelvic CT which showed diverticulosis, small hiatal hernia, and left kidney stone, tons of labs which have largely been fine, pap and mammo were fine, a CXR in late May was okay. I had the left ear/neck pain before the US and CT in early June, and all they showed was the tumor on the left, so I guess that should comfort me? I know pleomorphic adenoma can turn to cancer but is pretty rare (like 1% chance if the tumor has been present <5 years) and is usually in older ppl, ppl who have had the tumor many years (15+), or ppl who have had it removed but it came back. Lymphoma doesn't seem likely, but idk. I have a good appetite, no night sweats, no unintentional weight loss. Guess all I can do is wait for the MRI on Wednesday and go from there.
Thanks for replying, Sugarcreek.
Yes, this helps comfort me a bit. I mean, I'm very sorry about your ailments, but it helps to know someone else has swollen parotids WITH symptoms but no cancer! I've been getting more frequent headaches, similar I think to what you describe at times - they've been kinda random, mostly on the left but sometimes on the right, sometimes general frontal, sometimes posterior which is new for me. My WBC has been normal so far - last checked in August. I've been wondering about Sjogren's but haven't been checked for it yet that I know of, and I forgot to ask about it. I don't think I've been checked for EBV either. I definitely have the dry mouth and somewhat dry eyes - they burn more at times. I've had lots of aches in the neck. On my right side I've been tender at the corner of the jaw, just behind the angle there, and I can feel a small soft lump, but idk if that's a tumor or a lymph node. It doesn't feel as hard as the tumor on the left. My upper jaw aches sometimes, and sometimes I get brief aches up under my jaw on the right or left. I replied a much longer response to Jemima if you're interested. lol. I'm home for lunch and just realized I'm late getting back because I wrote so much! Thanks again. I get an MRI Wednesday, so I guess I just have to wait and try to keep the anxiety down until I get through that. I still have a 16 year old at home. None of my 4 kids are married or have kids yet. I'm 53 and certainly not ready to check out yet. I don't have time or money for cancer. lol. So I'm just hoping to get through this somewhat unscathed!Oh, also, do your lymph nodes swell at all?
I’m so sorry, tthoney. Health stuff without answers is for the birds! Do you have swollen lymph nodes, too? What I thought was a lymph node on the left, I think is actually the pleomorphic adenoma tumor. It’s fairly hard but movable and biopsied benign. On the right I have an enlarged lymph node - pretty sure it’s a node cuz the US tech looked at it and said it has its fatty hilum - and it seems to be getting a little bigger as symptoms increase on the right, maybe firmer, but still very mobile. Plus I have one slightly tender node in the middle of each cheek.
My gosh, I'm REALLY sorry I typed such a long response earlier. My anxiety has been off the charts. This is such a weird experience.
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Hi Jeans69,
Don't worry! It Might have seemed long to you, but it's totally fine here - these are really complicated things to describe, and we can't sum it up in just a few sentences! I appreciate you sharing with us all
I can understand why you've been feeling so anxious - it sounds like there's a lot going on in your body, and with the big C word bouncing around, it's no surprise you're feeling deeply rattled. With so much pain too, it also makes sense that you've got fibromyalgia on your radar. Is it on the doctor's radar too? I'm so sorry you're going through so much!
So, it's not clear yet whether you're going to land with fibromyalgia or something else, but the things that you can do that would help fibromyalgia will probably help you now - so there's no harm in starting! I'm going to come at this from that angle.
The thing with fibromyalgia is that it can create all sorts of phantom pains, but it can also amplify pain that has a real source. Perhaps it might comfort you to hear my back pain story: I have a bunch of damage in my lower spine from a horse riding accident that actually happened after my very earliest signs of fibro (not that I knew what was going on back then!) They can see in scans that my sciatic nerve is being pressed, and I was in so much pain that I was referred to a spinal surgeon. In the meantime, I received my fibro diagnosis and started learning how to manage the condition. Low and behold, my back pain dropped to a tiny fraction of what it had been before - it still impacts what I can do, but is nowhere near bad enough for me to pursue surgery. The moral of the story is, if you have fibromyalgia, and you learn how to manage it, many of your aches and pains may fade significantly, whether they have a local root cause or not!
The next thing that's really important to try to assimilate is that fibro symptoms - and so-called "flares" where everything gets turned up to high-volume - are highly triggered by stress. For a lot of people first dealing with the condition, it's really easy to get locked into a vicious cycle, because we're all naturally inclined to find pain stressful! If we accidentally put our hand on the stove, our brain creates a big response that makes us move it quickly, but with fibro pain, we can't take our hand off the stove. However, while fibro pain is horrible to feel, it isn't actually a threat to us.
If we feel pain, and fall into a response of stress and fear (sympathetic nervous system over-drive), that will trigger the symptoms more. But, if we can tell ourselves that the pain isn't scary, and let it come and go without letting a stress response take over (keep the parasympathetic nervous system at the helm), there's a good chance that we'll be able to break the cycle and calm everything down. This stuff takes practice to master, but it really helps to understand the goal. I was using meditation too, to handle anxiety, but only when I worked with a psychologist on specifically interrupting that trigger - and got that I needed to start mentally saying "Oh, hi pain, you're here again! We'll just co-exist here for a little while!" - did it start to really do the trick
Not being a doctor, I can't speak with any certainty, but I imagine that your body's resources have probably been stretched to the max lately. Lots of little and large problems, and infections to fight off. As you go through getting your MRI and seeing where to go next with your doc, I'd focus as much as you can on self-care. So, good nutrition, pacing your activities as much as possible (as far as work permits!), sleep hygiene, and relaxation - just to get you started - and being emotionally kind to yourself too. These things make a massive difference to fibro - really surprisingly so - and will support your body as it does whatever it needs to do anyway, so always a good tactic. The fantastic moderator of this forum, Sunkacola, created a newcomer's guide to managing fibro that you can find here. You might also find some value in reading about spoon theory, if you don't know that one already!
53 is definitely too young to be only looking downhill! I really hope this is just a dip with a bounce back up on the other side. If you can get started with the self-care, and when your doctor draws some conclusions, then you can decide whether you should/want to try medications, supplements, and so on, or what else is on the horizon. In the meantime, please do let us know how you get on with your scan. I'll keep everything crossed for you - good luck!
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Hi Jeans89,
There's a really big forum thread tracking people's responses to the vaccine that you can read here!
You're a gem. Thanks for all this. Truly. Every time I've been scared that I have cancer (it's happened a few times lol), I'm scared into clean eating, and every time, most of my pain goes away. I was/am really obese but have lost quite a bit (long way to go) and am still trying to stay clean and just do better all around. I'm not exercising regularly yet, and I'm frustrated about that. But I truly think diet has something to do with it. I want to have allergy testing done. I suppose I should do the elimination diet, but I sure don't want to have to. Did you do either? It's just super hard to eat 100% clean when you're working and tired and live where I do (in a small rural town with limited grocery choices).Hi Jeans69,
Don't worry! It Might have seemed long to you, but it's totally fine here - these are really complicated things to describe, and we can't sum it up in just a few sentences! I appreciate you sharing with us all
I can understand why you've been feeling so anxious - it sounds like there's a lot going on in your body, and with the big C word bouncing around, it's no surprise you're feeling deeply rattled. With so much pain too, it also makes sense that you've got fibromyalgia on your radar. Is it on the doctor's radar too? I'm so sorry you're going through so much!
So, it's not clear yet whether you're going to land with fibromyalgia or something else, but the things that you can do that would help fibromyalgia will probably help you now - so there's no harm in starting! I'm going to come at this from that angle.
The thing with fibromyalgia is that it can create all sorts of phantom pains, but it can also amplify pain that has a real source. Perhaps it might comfort you to hear my back pain story: I have a bunch of damage in my lower spine from a horse riding accident that actually happened after my very earliest signs of fibro (not that I knew what was going on back then!) They can see in scans that my sciatic nerve is being pressed, and I was in so much pain that I was referred to a spinal surgeon. In the meantime, I received my fibro diagnosis and started learning how to manage the condition. Low and behold, my back pain dropped to a tiny fraction of what it had been before - it still impacts what I can do, but is nowhere near bad enough for me to pursue surgery. The moral of the story is, if you have fibromyalgia, and you learn how to manage it, many of your aches and pains may fade significantly, whether they have a local root cause or not!
The next thing that's really important to try to assimilate is that fibro symptoms - and so-called "flares" where everything gets turned up to high-volume - are highly triggered by stress. For a lot of people first dealing with the condition, it's really easy to get locked into a vicious cycle, because we're all naturally inclined to find pain stressful! If we accidentally put our hand on the stove, our brain creates a big response that makes us move it quickly, but with fibro pain, we can't take our hand off the stove. However, while fibro pain is horrible to feel, it isn't actually a threat to us.
If we feel pain, and fall into a response of stress and fear (sympathetic nervous system over-drive), that will trigger the symptoms more. But, if we can tell ourselves that the pain isn't scary, and let it come and go without letting a stress response take over (keep the parasympathetic nervous system at the helm), there's a good chance that we'll be able to break the cycle and calm everything down. This stuff takes practice to master, but it really helps to understand the goal. I was using meditation too, to handle anxiety, but only when I worked with a psychologist on specifically interrupting that trigger - and got that I needed to start mentally saying "Oh, hi pain, you're here again! We'll just co-exist here for a little while!" - did it start to really do the trick
Not being a doctor, I can't speak with any certainty, but I imagine that your body's resources have probably been stretched to the max lately. Lots of little and large problems, and infections to fight off. As you go through getting your MRI and seeing where to go next with your doc, I'd focus as much as you can on self-care. So, good nutrition, pacing your activities as much as possible (as far as work permits!), sleep hygiene, and relaxation - just to get you started - and being emotionally kind to yourself too. These things make a massive difference to fibro - really surprisingly so - and will support your body as it does whatever it needs to do anyway, so always a good tactic. The fantastic moderator of this forum, Sunkacola, created a newcomer's guide to managing fibro that you can find here. You might also find some value in reading about spoon theory, if you don't know that one already!
53 is definitely too young to be only looking downhill! I really hope this is just a dip with a bounce back up on the other side. If you can get started with the self-care, and when your doctor draws some conclusions, then you can decide whether you should/want to try medications, supplements, and so on, or what else is on the horizon. In the meantime, please do let us know how you get on with your scan. I'll keep everything crossed for you - good luck!
As for stress, it's been horrid. The whole last decade I've lived in sort of a toxic soup of grief, anxiety, PTSD, stress, depression.... I've been very sedentary. I've been lonely. I've eaten horribly. I'm paying for it now.
And I started googling stuff when these symptoms started, drove myself crazy, then I stopped for a while, but when symptoms flared up, I dug in again, and you know how that goes. It's hard though because when the drs act like everything's due to your anxiety, then you feel like it's up to you to dig and find some answers. It's all so ironic because at the end of last year I decided to start taking better care of myself. I decided that this year I'd start going to the dr again for health screenings (something I've been terrified to do after my husband died of cancer). I procrastinated, and a bout of asymptomatic diarrhea kicked me to the clinic in March. So now, I'm like, if I find something dreadful, I'm just going to be so pissed at life. Would hardly be fair. But then, life isn't fair.
I've been meditating and have a couple Reiki sessions scheduled, and I'm trying to get an appt with my therapist again. I was in therapy but quit a year or two ago, which was dumb.
The internist I just saw is looking for autoimmune things. My ENT friend that I've chatted with also thinks it's something like that. Bloodwork hasn't shown anything yet, except my CRP is up a little.
You mentioned your back pain - ty for sharing that. I've really wondered about my back pains. And lately the tenderness up/down the right side of my abdomen is back again, too, so that makes me wonder if I am having a big flare-up of something. That makes me feel that cancer is less likely, so that's actually comforting.
Throat/neck/brain cancer are really super unlikely, yet my symptoms point that way, so I'm just in limbo until testing is all done, I guess. Thanks so much for being there when I needed it.
Well, I'm all over the place again. Sorry. Thanks again. I will keep you posted. <3
Not sure if I mentioned, my knees and hips ache sometimes (just other pains I'm not sure I mentioned ha). I'm on my feet a lot at work. Back, feet/ankle pain have been with me a while now. I also have urinary/bowel urgency sometimes. It seems to come and go. Like, in the morning I'll wake up and feel all relaxed and fine, then BOOM I have to pee, and I have to lie there and control the urge before I get up. I've had a rare bout of bowel incontinence, too. So with the scalp numbness, I worry about a brain tumor or something, but I think the urine/bowel issues are more likely to be from the back problems. That's what I'm telling myself anyway. I don't think brain tumors are usually so quiet, but idk.Hi Jeans69,
Don't worry! It Might have seemed long to you, but it's totally fine here - these are really complicated things to describe, and we can't sum it up in just a few sentences! I appreciate you sharing with us all
I can understand why you've been feeling so anxious - it sounds like there's a lot going on in your body, and with the big C word bouncing around, it's no surprise you're feeling deeply rattled. With so much pain too, it also makes sense that you've got fibromyalgia on your radar. Is it on the doctor's radar too? I'm so sorry you're going through so much!
So, it's not clear yet whether you're going to land with fibromyalgia or something else, but the things that you can do that would help fibromyalgia will probably help you now - so there's no harm in starting! I'm going to come at this from that angle.
The thing with fibromyalgia is that it can create all sorts of phantom pains, but it can also amplify pain that has a real source. Perhaps it might comfort you to hear my back pain story: I have a bunch of damage in my lower spine from a horse riding accident that actually happened after my very earliest signs of fibro (not that I knew what was going on back then!) They can see in scans that my sciatic nerve is being pressed, and I was in so much pain that I was referred to a spinal surgeon. In the meantime, I received my fibro diagnosis and started learning how to manage the condition. Low and behold, my back pain dropped to a tiny fraction of what it had been before - it still impacts what I can do, but is nowhere near bad enough for me to pursue surgery. The moral of the story is, if you have fibromyalgia, and you learn how to manage it, many of your aches and pains may fade significantly, whether they have a local root cause or not!
The next thing that's really important to try to assimilate is that fibro symptoms - and so-called "flares" where everything gets turned up to high-volume - are highly triggered by stress. For a lot of people first dealing with the condition, it's really easy to get locked into a vicious cycle, because we're all naturally inclined to find pain stressful! If we accidentally put our hand on the stove, our brain creates a big response that makes us move it quickly, but with fibro pain, we can't take our hand off the stove. However, while fibro pain is horrible to feel, it isn't actually a threat to us.
If we feel pain, and fall into a response of stress and fear (sympathetic nervous system over-drive), that will trigger the symptoms more. But, if we can tell ourselves that the pain isn't scary, and let it come and go without letting a stress response take over (keep the parasympathetic nervous system at the helm), there's a good chance that we'll be able to break the cycle and calm everything down. This stuff takes practice to master, but it really helps to understand the goal. I was using meditation too, to handle anxiety, but only when I worked with a psychologist on specifically interrupting that trigger - and got that I needed to start mentally saying "Oh, hi pain, you're here again! We'll just co-exist here for a little while!" - did it start to really do the trick
Not being a doctor, I can't speak with any certainty, but I imagine that your body's resources have probably been stretched to the max lately. Lots of little and large problems, and infections to fight off. As you go through getting your MRI and seeing where to go next with your doc, I'd focus as much as you can on self-care. So, good nutrition, pacing your activities as much as possible (as far as work permits!), sleep hygiene, and relaxation - just to get you started - and being emotionally kind to yourself too. These things make a massive difference to fibro - really surprisingly so - and will support your body as it does whatever it needs to do anyway, so always a good tactic. The fantastic moderator of this forum, Sunkacola, created a newcomer's guide to managing fibro that you can find here. You might also find some value in reading about spoon theory, if you don't know that one already!
53 is definitely too young to be only looking downhill! I really hope this is just a dip with a bounce back up on the other side. If you can get started with the self-care, and when your doctor draws some conclusions, then you can decide whether you should/want to try medications, supplements, and so on, or what else is on the horizon. In the meantime, please do let us know how you get on with your scan. I'll keep everything crossed for you - good luck!
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Jeans89,
I hope you will check out my information post on how to manage fibromyalgia. There are a lot of ideas there, and many people have benefitted from trying them out.
You do not have to go from zero to 60 overnight. Meaning you don't suddenly have to eat nothing but healthy food if you haven't been doing that. Just start with one thing. Say, sugar or caffeine or both. Cut down. Next week cut it down a bit more. And add in something really healthy, like a salad every day, or steamed veges and rice. Eat all the raw vegetables you want, any time. sometimes snacking on carrots will help with cravings for unhealthy foods.
I knew someone who decided to go off coffee, but was very attached to it and addicted. She literally cut down on how many grounds she was using so slowly and in such minute quantities that it took a year to get from a cup of coffee to a cup of slightly coffee-flavored water, and finally to none at all. but it got her off it, and the change lasted.
You don't have to do it all, all at once. In fact, as the above example indicates, if you do it slowly but surely it will be far more likely to be a lifestyle change, and that is what you need. But you do have to start somewhere and then not give up, if you want to be your own best friend in handling all of this. Be kind to yourself and every day that you take a step forward, tell yourself you did a good job. Start exercising by just walking around the house at first, and tell yourself that's good. Build up as slowly as it seems best to you. But do it.
I hope you will check out my information post on how to manage fibromyalgia. There are a lot of ideas there, and many people have benefitted from trying them out.
You do not have to go from zero to 60 overnight. Meaning you don't suddenly have to eat nothing but healthy food if you haven't been doing that. Just start with one thing. Say, sugar or caffeine or both. Cut down. Next week cut it down a bit more. And add in something really healthy, like a salad every day, or steamed veges and rice. Eat all the raw vegetables you want, any time. sometimes snacking on carrots will help with cravings for unhealthy foods.
I knew someone who decided to go off coffee, but was very attached to it and addicted. She literally cut down on how many grounds she was using so slowly and in such minute quantities that it took a year to get from a cup of coffee to a cup of slightly coffee-flavored water, and finally to none at all. but it got her off it, and the change lasted.
You don't have to do it all, all at once. In fact, as the above example indicates, if you do it slowly but surely it will be far more likely to be a lifestyle change, and that is what you need. But you do have to start somewhere and then not give up, if you want to be your own best friend in handling all of this. Be kind to yourself and every day that you take a step forward, tell yourself you did a good job. Start exercising by just walking around the house at first, and tell yourself that's good. Build up as slowly as it seems best to you. But do it.
Thank you so much for this wisdom and encouragement. I really appreciate it. I'm so glad you commented because I'd forgotten to check out your link. I have it open now and will read it more thoroughly. I just now briefly skimmed it, and I am trying to do some of those things - decrease stress, focus on positive things, eat better, exercise, get better sleep. My sleep has been whacked for about 3 years now. I hate it. I do take Xanax to help me sleep sometimes, but hope to not need it at all. I bet if I just got more fresh air and exercise, I wouldn't need it.
I really am an all or nothing person, and it has sabotaged me so many times in the past. So I will try try try to be content in taking baby steps and celebrating each step toward a better life. I tend to go whole hog and then feel like a failure and give it all up. And when I'm worried I have cancer, I'm afraid to eat anything. I don't know what to eat sometimes so don't eat at all, or just grab a banana or something. I don't want to live in fear of food. That's dumb.
Anyway, tysm. I really love humans like you all who give of your time and knowledge to help others. <3
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