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8-| Hi, I am new on board. I have been have pain for 2 years. It started in the front of the neck, moved to a knot in the back of my head (where it would hurt lying on a cervical pillow) and then to a wierd taste in my mouth (metallic) and then walla! My tongue starting hurting, burning, then sometimes jaw burn, hurt... throat always sore and hurt, stays red... thought it was my teeth sometimes... neck really sore... the short is, Drs. have ruled out anything with the cervical nerves through MRI's. The last MRI showed I have enlarged cervical lymph nodes (submandibular and posterior cervical, the areas I stay sore in) They also found a cyst on my thyroid 1cm. I have had "several" upper respiratory infections in the last year (laryngitis, pneumonia, vertigo, ear ache) The ENT I am seeing suggest getting my tonsils out. I hope this works. Has anyone else out there experienced these same feelings and realized it was there tonsils?

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I didn’t have such severe symptoms but I had weird symptoms that couldn’t be explained. I had a lump in my throat where the Adam’s apple lies, it is actually what I felt every night after a hard work day. When I saw a doc, she told me there was no lump and that lumps in throat are often felt due to stress.
Ok, I was stressful at the time but the lump would then impair my breathing sometimes that I would have to take very deep breaths in order to get some air. Sometimes my throat would start to hurt and I would start coughing but my doc still found nothing, so she sent me to an ENT.
She had me checked and said that there was nothing in the throat and again that lumps in throat often appear due to stress. The she told me my tonsils were nearly dead and that they should be removed.

I haven’t made that decision yet because I am not sure that all my symptoms were related to the dead tonsils.

The lump did go away after a month or two but was real for the time and caused me trouble every evening. I wouldn’t feel it in the morning after a good night sleep but would appear soon after.
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I have had my tonsils removed and feel like and infection set up and my tongue would swell and nearly choke me and like my food gets caught in my throat and at the back of my throat feels sore and irritated and i feel a knot under my chin that every morning i wake up i cannot breathe and i am worried because i have had vertigo so bad that i cannot walk and it feels like my head is going to fall forward the funny thing about this is that i have never had vertigo until my tonsils came out and i tried to get another prescrition for infection prevention he let me sit there and suffer with this and now he is giving me grief like interfering with my care now and now i have to suffer with ringing in my ear and throat very sore becaue he let infection set up there and close up and now i am having to suffer. and i was not like this before so i dont understand how anyone can say this is my mind that when i press on the place where they took them out and i get some relief or take some scissors back there and cut a small hole back there and relieve some pressure off of them and then i feel better i feel like i need more room in my throat and then i will be able to swallow.
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KNOT ON RT SIDE UNDER JAW. WENT TO 2 DOC. 1 SAID EAR INF. & OTHER SAID BAD TOOTH.HAD TOOTH PULLED, BUT STILL HAVE KNOT
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I had my tonsils removed 4 months ago and my trouble started on day 7 post op.
It felt a lump in my throat, it is a swollen lymph node(jugulodigastric node) I still have it along with the red sore throat, constant ear pain with the occaisional sharp shooting pains and constant ringing in the ears.
When I swallow, I have a pinching/stabbing feeling in my throat on the right side. I
have been on amoxicillin, dioxicillin, Biaxin 2 times, Clinamyicin, cipro, and another antibiotic that I can't remember the name of, it begins with an "r" I have been steriods six times, and have had three steriod shots.
The high dose steriods (60mg) would help reduce the pain a bit, but gets worse when I am off them. Nothing has cured me.

I am very frustrated with my doc, he says it is not related to the tonsillectomy, and doen't know what is wrong with me, but wants to remove the node. I have had a Fine Needle Aspiratin biopsy, and it shows no maglignancy. I am seeing another doc now and am waiting on blood work results.
I got my medical records from my doc and was looking them over and they are not acurate >:( For example at my 12 day post op visit, I was complaining about the node and he examined it and perscribe steriods. All he wrote down was "doing well perscribed steriods" If I was doing well, why the he!! did I need steriods? >:(

A few visits later he wrote about the node, (because we did a CT) and said that it was there before the surgry when he treated me for tonsilltes. 1(14 days pior to the surgery) That's bull@%&*.

I know this is all from the tonsillectomy. Your lymph nodes and tonsils are apart of you lymphmatic system and immune system.
The causes of a swollen lymph node are cancer, or a cut, bite, scratch or trama close to the affected node. Well, I would say having your tonsils ripped out is pretty much a trama >:(

Chris40, I am guessing you are 40 yrs old, well so am I. They say it is difficult for older adults to have the surgery. My doc used the Coblation method. He told me he was going to use a new method, I wounder if maybe he had not used the new equipment much and was not used to it and maybe did something wrong in there? What method did your doc use?

I am desperate for HELP! Someone please HELP find out how to free me from my tonsilhell :'(
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I am 28 and had my tonsillectomy 6 weeks ago. I have persistant swollen glands i my throat (either submandibular or jugular im not sure). The right side is about twice the size of the left. They are not exactly painful unless you start really pushing at them, they are slightly moveable and rubbery. I can also feel a constant lump in my throat, i have a white coated tongue, still cannot taste properly especially sweetness and overall do not feel that well.

I typed swollen glands into the internet and what hell I am going through now! Now I am getting an ultrasound for cancer, a blood test for HIV or Hepatitis and generally anxious and stressed out. It does however sound like other people have alot of these complications following tonsillectomies so maybe i shouldnt worry myself to death.

I dont understand why the ENT specialists dont prepare people for the posssiblitity of these complications! I wasnt even prepared properly for the 2 weeks following the operation which I considered absolute agony. I had a sore tongue, the whole right side of my face and ear everything was agony. Im a bit f@$ed off that i wasnt prepared for it and am extremely worried about my swollen throat glands. Anybody alse having similar complications?
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I can sympathize with you all. After OVER A YEAR, of an illness YET TO BE DIAGNOSED, I have come to the conclusion that doctors just really don't know what they are doing.

To make a long story short: flu like illness 2x, did not fully resolve as I was left with swollen glands under my chin (right worse than left). Complicated to ALL OVER body pain in muscles--did antibiotics with some success, then prednisone 3 times with some success, but NOTHING has resolved the problem. Elevated white blood cells and swollen spleen, which later normalized.

Many blood tests which showed I had Epstein-Barr virus (I had mono once.) and toxoplasmosis (could not tell if active or past, but should be past by now.) Lyme all negative, supposedly, but showed two positive bands. They won't treat unless you have five. No connective tissue disease, no neurological problems, no MS, no rheumatoid arthritis.

My recent tests showed that the muscles and bones in my neck are pushing against my esophagus. I had the swallowing test, because I felt like someone was choking me all of the time. This feeling came only two weeks after an endoscopy/colonoscopy (as part of above tests). Now, I have to see that doctor again, and I'm wondering if the endoscopy caused the choking feeling, as I didn't have it before.

I have a stiff neck, my tongue hurts on the underside where it connects, and I STILL have all over body pain particularly in my limbs. It comes and goes and moves around and is ALWAYS bilateral. On and off headaches. I can't get a pillow that makes me comfortable. My chiropractor is good and until this illness, had resolved accident related neck pain.

I've had the STRESS diagnosis too, which is an easy one, but after a summer off (I'm a teacher.) doing absolutely NOTHING stressful, I feel as sick as I did at the start of the "doing nothing", albeit VERY rested.

I had a root canal tooth removed, because some of the symptoms started shortly after that, but still no cigar. Still sick.

One doctor wanted to try the fibromyalgia catch all on me, but I have NO trigger points at all. Plus, sometimes, I just get an overall sick feeling like you do when you are coming down with the flu.

At this point, I'm awaiting more tests, control pain with Ibuprofen, and am trying not to ruin my stomach. So, I take it only when I can't stand it anymore and with food.

My concern is that they'll eventually find out I had some kind of treatable disease, but due to the long duration of this disease, it will be too late.

My next step is to see someone outside of local doctors at a major medical facility like Hershey, Mayo or John's Hopkins and hope for an answer.

I live at about 2/3 capacity WITH pain meds, and 1/2 without.
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I have about the same symptoms as you, but they think I have scleroderma. I have body aches all over, my neck feels thick and it moves around, usually on the right side though...just moves up and down there. My teeth ache and my tongue somethings hurts...let me know if you find anything out!
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i am feeling alot like all of these people except i have no node problem, just got the matalic taste then the jaw started feeling very tired when eating. that lead to a numb sensation in my mouth and side of my face. my tongue started stinging or burning, along with the rest of my mouth. this happens everyday, and first thing in the morning it seems better and gets worse as the day goes by. its about to drive me nuts. this started last june. ive had mri and cat scan of head area. 1st doctor told me to get use to it. 2nd doctor says he can fix me! I will keep everyone posted if anyone cares. :$
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Been reading some symptoms and just wanted to pass something on. I had a friend that was having trouble with her tongue burning and turns out she has a vitamine B12 deficiency. Hope this helps someone.
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hey mul98, I have the same symptoms. Did you ever find out what it was? I've been to the doctor a dozen times and get the feeling he thinks I'm a hypochondriac.
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I think that would be helpful to know that it's possibly a B12 deficiency. Has anyone looked into that? I would like to know how that works out for someone taking it.
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klange wrote:

I have about the same symptoms as you, but they think I have scleroderma. I have body aches all over, my neck feels thick and it moves around, usually on the right side though...just moves up and down there. My teeth ache and my tongue somethings hurts...let me know if you find anything out!

mul98 wrote:



I can sympathize with you all. After OVER A YEAR, of an illness YET TO BE DIAGNOSED, I have come to the conclusion that doctors just really don't know what they are doing.

To make a long story short: flu like illness 2x, did not fully resolve as I was left with swollen glands under my chin (right worse than left). Complicated to ALL OVER body pain in muscles--did antibiotics with some success, then prednisone 3 times with some success, but NOTHING has resolved the problem. Elevated white blood cells and swollen spleen, which later normalized.

Many blood tests which showed I had Epstein-Barr virus (I had mono once.) and toxoplasmosis (could not tell if active or past, but should be past by now.) Lyme all negative, supposedly, but showed two positive bands. They won't treat unless you have five. No connective tissue disease, no neurological problems, no MS, no rheumatoid arthritis.

My recent tests showed that the muscles and bones in my neck are pushing against my esophagus. I had the swallowing test, because I felt like someone was choking me all of the time. This feeling came only two weeks after an endoscopy/colonoscopy (as part of above tests). Now, I have to see that doctor again, and I'm wondering if the endoscopy caused the choking feeling, as I didn't have it before.

I have a stiff neck, my tongue hurts on the underside where it connects, and I STILL have all over body pain particularly in my limbs. It comes and goes and moves around and is ALWAYS bilateral. On and off headaches. I can't get a pillow that makes me comfortable. My chiropractor is good and until this illness, had resolved accident related neck pain.

I've had the STRESS diagnosis too, which is an easy one, but after a summer off (I'm a teacher.) doing absolutely NOTHING stressful, I feel as sick as I did at the start of the "doing nothing", albeit VERY rested.

I had a root canal tooth removed, because some of the symptoms started shortly after that, but still no cigar. Still sick.

One doctor wanted to try the fibromyalgia catch all on me, but I have NO trigger points at all. Plus, sometimes, I just get an overall sick feeling like you do when you are coming down with the flu.

At this point, I'm awaiting more tests, control pain with Ibuprofen, and am trying not to ruin my stomach. So, I take it only when I can't stand it anymore and with food.

My concern is that they'll eventually find out I had some kind of treatable disease, but due to the long duration of this disease, it will be too late.

My next step is to see someone outside of local doctors at a major medical facility like Hershey, Mayo or John's Hopkins and hope for an answer.

I live at about 2/3 capacity WITH pain meds, and 1/2 without.

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Hello

I too have pain coming from the bottom of my tongue shooting to my right lower jaw. This has been going on since June and is getting worse. It feels like i'm being electrocuted. Also I have had stiff neck's one day on one side and then later on the other side. My muscles in my upper front legs feel tight and my ankles hurt here and there. Not to mention my arms and shoulders.

I thought I was just getting old with the other pains but after reading this it sounds like an unknown desiese.

If anyone has the answer please help this is painful.
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lnord wrote:

klange wrote:

I have about the same symptoms as you, but they think I have scleroderma. I have body aches all over, my neck feels thick and it moves around, usually on the right side though...just moves up and down there. My teeth ache and my tongue somethings hurts...let me know if you find anything out!

mul98 wrote:



I can sympathize with you all. After OVER A YEAR, of an illness YET TO BE DIAGNOSED, I have come to the conclusion that doctors just really don't know what they are doing.

To make a long story short: flu like illness 2x, did not fully resolve as I was left with swollen glands under my chin (right worse than left). Complicated to ALL OVER body pain in muscles--did antibiotics with some success, then prednisone 3 times with some success, but NOTHING has resolved the problem. Elevated white blood cells and swollen spleen, which later normalized.

Many blood tests which showed I had Epstein-Barr virus (I had mono once.) and toxoplasmosis (could not tell if active or past, but should be past by now.) Lyme all negative, supposedly, but showed two positive bands. They won't treat unless you have five. No connective tissue disease, no neurological problems, no MS, no rheumatoid arthritis.

My recent tests showed that the muscles and bones in my neck are pushing against my esophagus. I had the swallowing test, because I felt like someone was choking me all of the time. This feeling came only two weeks after an endoscopy/colonoscopy (as part of above tests). Now, I have to see that doctor again, and I'm wondering if the endoscopy caused the choking feeling, as I didn't have it before.

I have a stiff neck, my tongue hurts on the underside where it connects, and I STILL have all over body pain particularly in my limbs. It comes and goes and moves around and is ALWAYS bilateral. On and off headaches. I can't get a pillow that makes me comfortable. My chiropractor is good and until this illness, had resolved accident related neck pain.

I've had the STRESS diagnosis too, which is an easy one, but after a summer off (I'm a teacher.) doing absolutely NOTHING stressful, I feel as sick as I did at the start of the "doing nothing", albeit VERY rested.

I had a root canal tooth removed, because some of the symptoms started shortly after that, but still no cigar. Still sick.

One doctor wanted to try the fibromyalgia catch all on me, but I have NO trigger points at all. Plus, sometimes, I just get an overall sick feeling like you do when you are coming down with the flu.

At this point, I'm awaiting more tests, control pain with Ibuprofen, and am trying not to ruin my stomach. So, I take it only when I can't stand it anymore and with food.

My concern is that they'll eventually find out I had some kind of treatable disease, but due to the long duration of this disease, it will be too late.

My next step is to see someone outside of local doctors at a major medical facility like Hershey, Mayo or John's Hopkins and hope for an answer.

I live at about 2/3 capacity WITH pain meds, and 1/2 without.



this post is so old but I hope you still check this. you should look into Reiter's syndrome. this sounds quite close to what my husband has. it's brutal.
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