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Throat pain

Posted , 9 users are following.

charlotte1824
charlotte1824

Does anyone else have unbearable throat pain. I have it nearly everyday. It's a bit like I saw throat but it's severe burning pain and sometimes clicks when I swallow like the neck has tightened up to much. I have an awful lot of face pain and teeth pain/numbness which most people on here don't mention they have. Is this part of fibro as I suspect it may be something else on top.

It's not tmj as its the jawline that hurts and feels like it swells or like I've got jowls that are pulling down, the teeth and roof of mouth I can't understand but they burn but feel numb at the same time. Dentist says teeth are fine, quick look down throat from GP looks fine. The only thing I do have is 2 white lumps which are near the tonsil on the right but not tonsil stones. I can't remember if they were actually there back when Dr looked so haven't had a Dr comment.

I just don't want to go back to GP, I am so sick of Drs and I'm sure they are sick of seeing me.

I also get liquid in my ears with excruciating pressure but my ears apparently look fine.

I had ultrasound on my throat which showed nothing and last year thyroid was fine, throats been going on much longer.

2 likes, 18 replies

18 Replies

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  • kaz_40
    kaz_40 charlotte1824

    Posted

    Hi charlottee1824 I suffer with my throat mine is more painful and feels sore  morethan burning. painful teeth. face. jaw .numbness I get in face, mouth ulcers gum pain. fibro symptoms is what I got told. white spots at the back of the throat normally indicate tonsilitis, so I would keep an eye on your throat. if more appear I would just seak advice from a pharmaciest or gp. My throat is off on all the time and has been for over a year. some symptoms of fibro can last a short time where as others can last longer. take care   
  • Bee70
    Bee70 charlotte1824

    Posted

    Wow, poor you, I have had TMJ, my jaw clicks a lot, but not to a point that you are suffering. I didn't get diagnosed with fibre till Aug 2014, and TMJ was detected a couple of years before my diagnosis, so not sure if linked to fibro.

    I hope others on this forum can advice further. Gentle hugs and take care wink x

  • charlotte1824
    charlotte1824

    Posted

    Thanks guys, I can open my mouth wide so I think the jaw joint is fine. The spots are lumps and are not tonsillitis which I've had before. They have been there a good year or so now I think. I do always have tonsil stones which I have to remove but no literature says these are problematic.

    The throat feels like it's been scraped a million times and is left burning and sore, I'm not sure a neck problem can cause pain in your face as pain normally goes downwards. I could deal with my pains from waist down but from waist upwards and in my neck and face I just despair.

    I'm sorry ur all in pain too, wish I could find something that would help us all get away from the constant pain and tiredness. I wonder if the pain went then we wouldn't be exhausted too

  • sylvia17461
    sylvia17461 charlotte1824

    Posted

    Hi Charlotte, this is me to a tee! Throat neck jaw ear teeth pain relentless!! Numbness in roof of mouth and tip of nose ! I was checked at ENT nothing found,  checked at dentist , deep X-rays at dental hospital , nothing nasty found. Then suddenly out of the blue i woke up and felt I had been hit by a truck. I don't know what other symptoms you have apart from pain ( fibro) i take it you have had the usual thyroid blood tests and returned normal ?? Ask for antithyroglobulin and peroxidase tests for autoantibodies , not done usually, also free T3 which is rarely done . You've had a thyroid ultrasound last year? Nothing showed ? Thyroid blood tests are renowned for being unreliable, ¡!! They will come back normal until the gland is so damaged or completely destroyed ! I had a long list of nasty symptoms all caused by autoimmune thyroiditis  . I had been " diagnosed" with CFS/ fibro and suffered for years before I was prescribed thyroid hormone replacement and got my life back . Sy
    • charlotte1824
      charlotte1824 sylvia17461

      Posted

      Wow, hi Sylvia, I can't believe someone else has these symptoms or had them, I had an antibody test done privately about 4yrs ago now but it showed no antibodies for autoimmune thyroid issues, i thought that once u had that test then there's no need to ever repeat, I may be wrong about that. My nhs thyroid results are always normal but they don't give them out freely even when you ask. I'm worried about demanding more tests from Drs as so many come back clear it makes me embarrassed! My mum has under active thyroid. I don't gain weight ridiculously fast like the symptoms suggest but due to the pain I don't excercise like I should so have been getting bigger. If I dieted I would loose slowly. I get heart palpitations which again I know can be thyroid but heart issues do run in our family. I have the pain worst in face, throat neck, shoulders etc but have pain lower body too like muscles squeezing and not letting go along with tingling pins and needles, numbness, and also dead leg or arm feelings, painful joints and muscles, symptoms switch around. I also have Raynaud's disease where the blood vessels constrict and don't let blood into your fingers and toes. I am shattered all the time, feel dizzy quite a lot and get headaches. Full ears that leak a bit but again all clear for infection etc. now and again I get a few good days where I'm 85% ok but then it will hit with force again.

      If it is my thyroid I hope it hurries up and gives up enough that it shows in a test. Not only is my body failing me but to add insult to injury the problem refuses to show up in any tests they do!!

      I'm so pleased to here you are feeling better, have your symptoms completely gone? I hear it's a bit awful trying to get in the right dose of thyroid meds due to Drs and the tests and not listening to patients symptoms.

    • charlotte1824
      charlotte1824 sylvia17461

      Posted

      1 more thing is I don't have a goiter. That seems to be one of the main symptoms. Did you?
  • sylvia17461
    sylvia17461 charlotte1824

    Posted

    Excerp from" notes from an endocrinologists lecture" hypothyroid disease does not usually cause pain in the throat or referred pain in face and dental structures , except in hashimotos which is an autoimmune inflammatory disease of the thyroid gland , and in a small percentage of people there can be pain and tenderness of gland and referred pain in the mandible and submandibular structure ( lower jaw and under neath lower jaw) " sounds like you , yes? ? No Charlotte I have never had a goiter I was the opposite  it took me years to get a thyroid ultrasound , results were very small and shrunken and inflamed gland , which points to hashimotos. Antibodies tests confirmed it tho endo said even without antibodies test it would be the same diagnosis.. I had the pain in muscles and joints, pins and needles in legs and arms, numbness in hands legs feet, foggy brain, lack of concentration, dizziness, difficulty swallowing , head pains , thudding heart , palpitations, and chronic fatigue plus the throat jaw  and face pain. A long story cut short I eventually found a doctor who agreed the symptoms pointed to thyroid and prescribed thyroid hormone replacement ( thyroxine) amazing! Within a few weeks my symptoms disappeared or at least eased , I am still not 100% well trying to find the right dose and med for me ( that's the tricky part) you are entitled to a printout of blood tests tho may make a small charge. Don't be embarrassed asking for further bloods or another ultrasound. The best test is a trial of thyroxine T4 ( this is the usual one given) if your GP won't give you it see another doctor . i don't want to confuse you so I will leave it at that. I am not saying everyone who has these symptoms has a thyroid disease I am not saying there is no such thing as ME/CFS or fibro I don't want to upset or annoy anyone suffering the most dibillitating illness I just felt if I was misdiagnosed for years it must happen to other people and may be you. Best wishes sy 

     

    • charlotte1824
      charlotte1824 sylvia17461

      Posted

      Hi Sylvia, yes that sounds exactly like my symptoms. Thanks so much for taking time to write that. I will go and see me gp again. The ultrasound was completely clear though so I will ask her for another antibody test.

      Sounds silly but I hope it shows something up so I can be put on meds that help rather than anticonvulsants that make me feel horrendous + all other symptoms still remain.

      I'm please you found your answer and are on the road to recovery. Are u in the UK ? i don't think Drs trial anyone based on symptoms here, there was 1 Dr who used to do that but unfortunately he passed away and not before the general medical council restricted his license and tore him to shreds after he had helped so many people.

      Thanks again

    • sylvia17461
      sylvia17461 charlotte1824

      Posted

      Yes I think you are talking about dr skinner? He was pilloried for going against blood tests and treating CFS/ fibro patients with thyroid hormone . He had many many grateful patients who had been told they had CFS/fibro and told just to live with it . Can I just say lumps anywhere should be investigated to be on the safe side ! If you are sure they are not stones have them checked out.. Dr durrant peatfield has a practice in surrey he doesn't believe blood tests are the best way to diagnose thyroid problems , worth having a read . Also dr John Lowe who states thousands of people are wLking around with undiagnosed thyroid disease because too much emphasis is put on thyroid blood tests ! Have a read and come to your own conclusion. I am from UK Northumberland and you're right trying to find a GP or endo who will give a trial going against bloods is nigh impossible took me years but when I did , the relief when all the pain and symptoms gradually faded away , ok so I am not 100% well but so grateful for the huge improvement . Hope all goes well with your next doctors appt  sy 
    • Trish67808
      Trish67808 sylvia17461

      Posted

      Hi Al

      This is my first time on here. Wow Sylvia, in fact all of you, its as though you are writing about me. I was diagnosed with underactive thyroid a year ago. i was also experiencing lots of other symptoms, intermittent random pains throughout body and every other symptom mentioned on here. I must say though my GP has been brilliant. in the last year, even through Covid i have had MRI scan, CT scan, numerous ultra sound scans, seen ENT and rheumatology, physiotherapist and i think I've had every blood test known to man. So i do feel very fortunate.

      The outcome of all that was, I have Fibro, a Cyst in my salivary gland, early onset Osteoarthritis in various joints. The most recent scan has shown my thyroid is small and inflamed, My GP has increased my levothyroxine and i am feeling a bit better but seeing ENT on Wednesday this week to discuss things further.

      The biggest problem for me at the moment is my neck, throat, jaw, face, ears and severe painful sinuses. Well just everything from my neck upwards.

      None of this is much help to any of you but just wanted to let you know that you are not alone with all the strange and weird symptoms. You are not going mad or imagining it, i know this is how many people are made to feel.

      The only thing i have learnt this year is heat helps my fibro pain and sea salt in warm water, gargled helps my mouth.

      Take care all, I will update you after ENT appointment

    • crystal81908
      crystal81908 Trish67808

      Posted

      hi

      i have the same kind of symptoma and pain everyday

      although i have hashimotos thyroiditis they believe i have fibromyalgia as well

      i have seen a ENT twice but they cannot find anything have had ct scan ultrasound etc and camera from my nose to my throat twice also coughing constant i have had every test known to man also blood work to rule out sjodrens RA and lupus i have had all these symptoms for 5 months now so frustrating

      Reply

  • lisa52101
    lisa52101 charlotte1824

    Posted

    Hi Charlotte, 

    i too have very painful mouth, often accompanied by but not always, a whole load of mouth ulcers. These can be anywhere from the back of my upper front teeth all the way across the roof of my mouth and down my throat. I also have pain from my TMJ running directly along the groove on the underside of my lower jaw. From my right cheekbone to my jaw and up into my ear is numb with very odd sensation and pain in my right ear. I also seem to suffer with quite bad dental pain. Apart from the problem with my TMJ which is caused by another problem entirely, I've been told everything is fine and it's all been put down to fibro. Oh, I forgot I also get what can only be described as love bite markings on the roof of my mouth which always accompanies the inflammation, (strange way to describe it, but that's exactly what it looks like). I've been told this is spontaneous bleeding from the smaller capillaries, but no one seems to know exactly why that should be. 

    By the looks of things on here, this kind of thing isn't that unusual after all. For the painful mouth I use an anaesthetic mouth wash and spray that either my GP or dentist will prescribe. It's also possible to buy it over the counter. 

    Not much help I'm afraid, other than your not alone with it. 

    Take care Lisa xx

    • charlotte1824
      charlotte1824 lisa52101

      Posted

      Hi Lisa,

      Thank you for your msg. I don't get ulcers or any visible inflammation in my mouth.

      Have you been tested for lupus or arthritis etc?

      When my rheumy was running tests he was convinced that I had lupus for a while and was frantically looking for rashes or ulcers etc on me.

      When I told him I don't get rashes or ulcers he became certain I didn't have either. Plus my bloods didn't show lupus or ra.

      Thanks x

    • lisa52101
      lisa52101 charlotte1824

      Posted

      Hi Charlotte, sorry for such a long delay in answering. 

      I have been checked for all of the autoimmune and RA conditions and they all came back negative. Apparently it's not a completely unusual reaction to have with fibro, what makes it complicated for me is that I have EDS. This is a genetic connective tissue disorder, so when I have damage to any tissue there is the possibility that my tissue will respond in a host of ways. My mouth and throat always becomes overly sensitive and inflamed. 

      I suppose I just got greedy with number of conditions and the rarity of the combinations of those conditions. 

      Hope you found out some answers for your mouth by now. 

      Take care, gentle hugs xx

  • sylvia17461
    sylvia17461 charlotte1824

    Posted

    Charlotte , any lumps should be investigated if you're sure they aren't tonsil stones have a doctor check them out just to be on the safe side ..
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