Sitting here now with a headache as you describe, I think - the pressure. It's frontal right now, and dull. And my throat aches. Do you have tinnitus? Maybe I've asked this before. It's hard to keep track of these conversations. I wouldn't say my pain is ever severe, but it does seem deep sometimes - like I have to push fairly deep to find the tenderness. It's going to be a long week waiting for the MRI and then the results. I'll probably be here a lot just yakking away in my anxiety. sighAside 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?
Gahhh, I hate it for all of us. It's insanity, all this worrying and wondering and waiting. Our bodies are strange machines. It has made me face my mortality hard, and that's not a bad thing really. We all have to eventually. But I hope it's no time soon. lol. Your symptoms sound so similar. I've googled like a mad fool, and I finally just started saving all the bits of info that comfort me into a file so I can look at it whenever I get scared. Head/neck cancer isn't that common really. Hang in there. <3Been dealing with fibro & CFS issues for years, but these symptoms are fairly new to me.
I been having right ear, throat & neck pain since January and occasional burning tongue.
Been to urgent care a few times, nothing found. Went to ENT, they did a nasal endoscopy, nothing showed, they suggested I see a gastroenterologist, which I did. He performed an endoscopy & colonoscopy, results were GERD & esophagitis which were preexisting.
Then I started having right teeth pain, I had 2 root canals done even tho nothing really had shown up on x-rays.
No change in pain..... I saw my endocrinologist because I have thyroid nodules, nothing much had changed there, but suggested biopsies which I haven't done yet.
I then went back to my primary doctor, he subscribed antibiotics thinking it was infection issues, no change, called him back, he now scheduled me for an MRI of soft tissue of the neck!
So stressed about all this testing with no results!!!!
Hi Jeans89,Hello again. So they bumped my MRI that I was to have of head and neck today to next Wednesday, so I'm still waiting on that. They tried to do it sooner, but it would've been at a different location in the same small tube they tried to squeeze me into last year. No, thanks. sigh. She did say only half my body would have to be in the tube this time, but unfortunately, she said it will take about 45 min for the head and another 45 for the neck. Ugh.
I can't remember what forum I was on when I was reading about people's throats feeling tired/weak. Do any of you have that? I've been noticing my throat feeling tired/strained after I talk a while (like when I polo a friend, otherwise I don't talk that long lol), and after I eat.
I feel like I have TMJ symptoms, Eustachian tube dysfunction, fullness/aches in my ears, clicking jaw, hearing air in my ears at times like when I blow my nose or open my jaw wide. I still don't have any trouble swallowing, and I don't have a cough. I have that globus sensation in my left throat, and it seems to be achier, and my left ear aches more. I really just want to get this tumor out and be sure it's benign. Ugh. I keep reading stats on head/neck cancer, and they're just not that common, and I don't drink or smoke, and they're more common in men...I think the odds of having it are >1%...but yet, some get it, so I worry. The odds of having a pleomorphic adenoma are slim, too, yet here I am. But, what would be the odds of having a benign tumor and another cancerous process going on at the same time? Not likely, right? The drs seem certain this is benign and think I have another process going on. They don't seem too concerned, but I've googled a ton, and everything says that persistent ear and neck pain could very well be cancer. Or GERD, but my GERD is better. Why would it be causing this now? I didn't have this feeling in my throat until my teeth were pulled. So I keep thinking infection....but I took a lot of antibiotics, and they didn't really help....or nerve damage....but why do I have any symptoms on the right side, too? Gahhhhh, I hate this!
Thanks so much for this. Honestly, I just can't get enough support and encouragement right now. It's a roller coaster - one minute I'm sure it's not cancer, and the next I'm sure it is. I started hot-packing again and doing some parotid massage, and I think that helps! I'm not sure why my pinkies are getting numb when I lie on my back, but I know that, also, is not entirely uncommon. I think I'm just like hyper-aware of everything in my body and my mind keeps trying to piece everything together into one big awful picture. Experiencing some new and worse symptoms in some areas and better in others - keeps it confusing. ha. Thanks again! <3Hi Jeans89,
I'm so sorry they delayed your scan - I know that's really not what you need right now!
I was just having a quick read up on the issues that fibromyalgia can cause in and around the throat. TMJ is a relatively common co-condition. Alongside swollen gland issues, some fibro sufferers experience dysphagia, which is throat weakness thought to be caused by similar mechanisms to the ones that give us general muscle weakness/post exertional malaise. I also found a study that said "fibromyalgia is frequently associated with ear-related symptoms such as feeling of ear fullness, earache, and tinnitus." Above all else, remember that fibromyalgia is responsible for a pretty full gamut of phantom sensations that can pop up anywhere in the body and hang around for long or short periods of time.
A few months ago, I was experiencing a very sharp and lasting pain in my xiphoid process (the tiny bone structure protruding inward at the bottom of the breastplate - something I didn't know existed until I looked it up!) that went on for weeks, and I was just starting to think, wow that's really strange, when it vanished and never came back! My suggestion is to remember that while it's true that you don't yet know for sure what's going on, fibro is a potential culprit that might explain away everything and is ultimately a manageable condition.
Can't stop stressing completely - I totally understand that - but I'd suggest try to take a big breath and lean in to your doctors not being too worried! Getting to the other side of your scan is going to drive you a bit nuts (I'd be exactly the same) but in the meantime, keep in mind that there is a possible explanation. Only your doctors can answer these questions in the end - but Googling fibro symptoms outside of the scope of fibro would keep anyone in a state of anxiety, so perhaps try to resist the urge when you can!
I feel so much for you in all of this. Good luck getting through it
Any time! I think you're dealing with so much, and being incredibly strong. You're still managing to be so proactive about trying to do the right things when feeling overwhelmed - not everyone would manage that! Hang in there - you're going to get through thisThanks so much for this. Honestly, I just can't get enough support and encouragement right now. It's a roller coaster - one minute I'm sure it's not cancer, and the next I'm sure it is. I started hot-packing again and doing some parotid massage, and I think that helps! I'm not sure why my pinkies are getting numb when I lie on my back, but I know that, also, is not entirely uncommon. I think I'm just like hyper-aware of everything in my body and my mind keeps trying to piece everything together into one big awful picture. Experiencing some new and worse symptoms in some areas and better in others - keeps it confusing. ha. Thanks again! <3
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.
Well, I can completely relate to that!!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.
This forum is not really strict about that sort of thing. We can go with a conversation sometimes and see where it leads, as long as it is not deliberately hijacked by someone who is starting a topic that has nothing to do with the original post or subsequent replies, so no worries.Btw, I'm new here and not really familiar with the format, and I just realized...did I hijack someone else's thread? I was scrolling up to see the first post, and I think I did. I'm so sorry.
Hi, TJB. So sorry you are suffering so much. Life is so cruel sometimes. I will have to google some of those diagnoses you listed. You're so right about the drs. They focus on one thing, get sidetracked, ignore things they shouldn't, etc. I guess they are only human, and bless the ones who really care and try, but some are so frustrating. I will finally have an MRI a week from today of my head and neck. I'm nervous. I have numbness in my scalp, so the internist suspected MS, but Sjogrens and other things can cause that, too, so who knows. I use the Isabel symptom checker online - it's supposed to be one of the most accurate at like 68% or something. ha. Anyway, I plug alllll my symptoms in, and the #1 thing it always says is Sjogrens. But MS, fibromyalgia, and different cancers are listed, too. The wait is so hard. I have had intermittent but persistent/almost daily ear/throat/neck pain for months now, and everything I google says cancer, but my biopsy said pleomorphic adenoma, so they haven't been too concerned about the symptoms. I mean, they're concerned and looking, but in no hurry. It's just nerve-racking.Hi,
I suffer a considerable amount of what you describe (diagnosed with FM CFS/ME, micro pit adenoma, astrophied thyroid, considerable gastro issues, spinal stenosis and more .
Tbh I believe I suffer with an autoimmune condition of some kind but the problem is when there are a lot of symptoms mixed with a lot of diagnosis dr’s do not focus on the whole picture, particularly as they only specialise in one area and won’t sway from. GP’s have little clue or inclination mostly and waft around at it, and only refer to a single specialist area at a time. Obviously this starts to run into years and still no overall complete consideration to symptoms.
Then comes the scratch of head and give up syndrome.
They hate being told what is sometimes obvious too.
As for your ENT have they mri’d your ears and behind them, as standard?
The list of checks to do are quite vast tbh..very frustrating and all this causes anxiety.
Misdiagnosis is too easy to be given too.
Id say be nice but insistent on what you feel should be being done/checked for you.
I do hope you get somewhere x
Gosh, thanks for remembering and asking. It was no fun. I give it zero stars/do not recommend. But I survived. ha. Why can't they improve them a little by now? It's 2021 lol. I still had a little anxiety because even though it was open in front of me, I had to be reclined in a tight space with my head in a vice. She screwed it on too tight and left a dark red mark on my forehead lol - gave me a headache. And wow, they're so loud and make so many different sounds---machine gun one minute, then a pause of silence, then BEEP BEEP BEEP BEEP!!! lol ANYWAY, enough whining...they told me the results should be on the dr's desk in 24 hours, so I shouldn't have to wait long for the results, but I'm super nervous. I keep plugging my symptoms in on the Isabel symptom checker, and it always lists Sjogren's #1. I hate that I find myself hoping I have it! I just don't want the big C. It lists mouth, throat, and laryngeal cancer farther down the list.How did you get on with your scan?
Also, I forgot this is the fibromyalgia forum. lmao. I'm also on a Sjogren's forum. I'll take either of them over cancer!Gosh, thanks for remembering and asking. It was no fun. I give it zero stars/do not recommend. But I survived. ha. Why can't they improve them a little by now? It's 2021 lol. I still had a little anxiety because even though it was open in front of me, I had to be reclined in a tight space with my head in a vice. She screwed it on too tight and left a dark red mark on my forehead lol - gave me a headache. And wow, they're so loud and make so many different sounds---machine gun one minute, then a pause of silence, then BEEP BEEP BEEP BEEP!!! lol ANYWAY, enough whining...they told me the results should be on the dr's desk in 24 hours, so I shouldn't have to wait long for the results, but I'm super nervous. I keep plugging my symptoms in on the Isabel symptom checker, and it always lists Sjogren's #1. I hate that I find myself hoping I have it! I just don't want the big C. It lists mouth, throat, and laryngeal cancer farther down the list.