Burning mouth syndrome with weird tonsil pain
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Ive searched the web and only found a couple of cases of anyone with my symptoms as far as burning mouth. I've been diagnosed with CFS, celiac and no food allergies on skin test but soy, dairy, fruit , nuts , and vegetables (including salt) severely burn my mouth and give me ulcers in my mouth as well as make my itch but no throat closing if any kind. I do not have mast cell syndrome either. I do not have eosinphillic esophagitis but endoscopy reveals inflammation and esophagitis negative for acid. 24 hour acid reflux test is negative and I'm on a strict diet. Doctors including the Mayo clinic are baffled because my damage isnt acid related, nor due to eosinphils from allergies and have insisted that food allergies can only cause damage through reflux or eosinphillic infiltration to which none apply to me. I have normak mast cell counts in my endoscopies, negative girl lyme , mold, sibo, candida and h pylori. Elimination diet hrlos with ulcers but not the throat inflammation. The most disturbing part of this is I get sharp stabbing pains around my tonsils that feel like spasms or burns but my tests show no spasms. I've had oral screens as well. At this point, all the specialists at the Mayo clinic are baffled . I can actually feel liquids and solids travel down my throat as well as they enter my stomach. I had a barium test that was normal as well. I have no hernia or lpr. Is there anyone whose had trouble with idiopathic burning mouth syndrome and or throat pain?
Oh I've also been tested for vitamin and mineral deficiencies....gluten, dairy, nut, sugar, fruit , vegetable, wheat free diet only cured mouth ulcers but not throat or tonsil pain. So there ya go.....my ling winded explanation. If you can be tested fir it....I've been tested. I'm not your typical celiac case here it looks like.
0 likes, 17 replies
jeremy04366
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philsey jeremy04366
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Dear Jeremy,
What you are suffering is almost unimaginable. I am so so sorry you are having to go through this nightmare. ME sucks and that's the biggest understatement ever.
When you have symptoms that the doc can't attribute even after extensive investigation - so that all the normal and scary causes are found absent, you may be pretty sure that they are M.E. related. Frequently it is just these counterintuitive oddities that confirm the illness, as a feature of CFS/ME is that it turns just about every medical and commonsense logic on its head.
A lot of sufferers have allergies, so I'm glad you've discovered the gluten issue: I would encourage you to spend a substantial period testing the absence of one item after another of your normal diet. It takes about two weeks to eliminate an item, say, potatoes, as a cause: so you have to be very disciplined. But it might just yield a dietry/allergenic causation.
Absent that, from my experience, I would guess your burning sensations are neurological. That is to say, not that they are in the mind, but they arise from a genuine disturbance in the body's signalling process. I will give you one or two examples.
I have heard reports of people whose symptoms change very fast - one woman's symptoms changed every 7 mins. So thank God for not having that burden. Mine change very very slowly. So about ten years ago, - 5 years after diagnosis, I developed a numbness in my right thigh going down to my knee which I still have. A definite area of skin and muscle which you could draw blood from and I wouldn't feel pain - just pressure. The other example I can offer lasted just two weeks. I had such sensitivity in the skin that my fingers burned with pins and needles just from tying my shoe laces, and when I went to the barber, I felt like shouting "stop cutting my scalp you're going to draw blood" - until I looked in the mirror and everything was normal: on inspection I
discovered that if I scratched my skin instead of the pain tailing off from the initial scratch, the graph did exactly the opposite: the pain began, stayed and increased exponentially. Totally opposite to normal commonsense intuitive or other diagnostic analysis. The nerves were sending all the wrong messages.
Yours sounds like the same - except in about the most unpleasant place imaginable given that eating is one of the most normal comforting experiences of life.
I know this sounds bleak, but if what you are suffering is neurological, with the nerves in your mouth and upper digestive tract sending frantic but phantom signals as though you had just swallowed a cup of bleach when all you drank was water - you may have to suffer this intense and scary problem for a totally unpredictable period of time. The only comfort is 1. that it won't last forever even if it lasts for years, since the average time a person takes going through the cycle of CFS is 7 years, and 2. that it is not actually damaging your tissues even though it feels like it is, so eat normally to keep up your body's nutritional health.
Meanwhile keep on the lookout for anything dietry that soothes the tissues instead of aggravating them (random examples, swallowing a shot of cool full cream milk - or a glass of sherry) which totally illogically but truly acts as a balsam calming the pains of eating your meal) - then allow yourself that indulgence.
This is all I can say: I hope someone else out there can reply with something helpful.
You have my prayers.
Philip
jeremy04366 philsey
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Unfortunately, I do have tissue damage through endoscopy , however as I've stated earlier I have no acid reflux or weakened valve. Seven month elimination hasnt yirlded any clue. I fasted for three weeks, sigh....no change
grailmoth jeremy04366
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Do you experience the burning sensation at times other than when you are eating? Are there any foods or drinks that don't cause it?
I tend to agree with philsey that it's most likely to be a nerve pain issue. Nerve pain is common with CFS, you might just have a particularly nasty form of it. I have had nerve pain in my shin where it felt like my leg was on fire just gently brushing my finger across the skin and putting socks on was agony, but fortunately that only happened to me during a couple of extremely bad flareups of my CFS and then it went away again.
What you are going through is sounds unbearable, I really hope that you can find relief. Maybe a neurologist would be able to help you?
jeremy04366 grailmoth
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No certain foods or drinks trigger it. I have done an elimination diet for seven months. It's not just neurological, endoscopy reveals damage but I'm negative for acid reflux . In the mirror you can see tindio stoned and tissue damage with a flashlight but no cause of the damage has been found.
grailmoth jeremy04366
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Ah I see. There must be some common ingredient between the foods that trigger it which you are having a reaction to, possibly something that is not normally tested for? And whatever the doctors may say about allergies, there are things medical science still doesn't know (consider CFS, still a mystery to most doctors and the cause of which is inconclusive in spite of research being done!) There has to be an explanation for what you are going through.
jeremy04366 grailmoth
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grailmoth jeremy04366
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jeremy04366 grailmoth
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lisa00385 jeremy04366
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It goes back to the weirdness of this disease it has a mind of its own. For the past 18 months my throat feels like it's going to close up and then a temporary dry cough. Another is muscle pain in my left breast for 5 years. Had a MRI it was fine. Hands cripple up for a few hours then goes away. Just weird s**t on top of everything else. I stopped going to the doctor for every little thing. One issue goes another replaces it. Too weird... stopped trying to figure it all out after 20 years. Just grateful for good days. I just roll with it. Mouth pain really sucks sorry about that.
jeremy04366 lisa00385
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It's funny you mention the hand thing, my fingers jerk sometimes after contacting or squeezing tight. It's like a delayed reaction. I have twitches alot as well but this whole throat/ mouth thing is insane.
philsey jeremy04366
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Sorry my friend I missed the bit about actual tissue damage showing up in endoscopy but not acid related. That is way outside my knowledge zone and if you've done every exclusion diet the only other guess is CFS-induced allergy in the tissue of the stomach. CFS can manifest as non-particular allergic reactions simply because the body's cytokines are totally freaked out.
My specialist says that in every infectious disease there is a perfectly orchestrated and specific recognizable cause-effect bodily response (rash, temperature etc etc). The cytokines have it all under control. But with CFS there is no orchestration; in fact he said there is no orchestra. So total chaos.
So whilst some might get an itching rash on their arm or in the mouth for which there is no explanation, maybe you have an actual rash on your insides, viz the damage showed by the endoscopy. A recent colonoscopy showed I have non-specific, non-accounted for red patches on the inside of my colon which I am told are not dangerous but are the cause of my persistent diarrhoea. Maybe, you got that, much much worse, in your upper digestive tract.
This is pure speculation, but I find there is sometimes comfort in having at least some rational explanation to account for our sufferings. Yours is about the worst I've ever heard of, so you must be incredibly brave, and all I can say is philosophical 1. respect to you, and you should respect yourself for handling what few could handle (I couldn't) 2. Allow suffering to teach you its universal lesson, (again most people who suffer in the West just don't get beyond anger) - which is compassion and humanity. Px
jeremy04366 philsey
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Thanks my friend, Ive battled gastritis with no cause as well. It's as if my digestion system is freaked out so there's some possible truth to your theory. I did have a colonoscopy with some redness as well but no cause. It's amazing how some similarities I find with people here ....we just don't know why...lol...inflammatory cytokines do play with us alot. Its like a never ending cycle. I really thought I'd test positive for mast cell activation but my 24 hour urine tests and tryptase test are always normal.....sigh...one day at a time
philsey jeremy04366
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Certainly whole organ systems like digestive can dysfunction creating IBS or Reflux Oesophagitis or Duodenal ulcer and it does sound like your CFS has hit majorly hard in this area.
Let's also not forget that CFS/ME is an umbrella term, under increasing scrutiny, and we are discovering there are whole brands of totally different illnesses called 'cancer' so there are bound to be a range of Fatigue Illness types, whose symptoms are similar but may have vastly differing pathologies. If only there was more research: It is not in the interest of good nation building to allow so much idle talent.
Yes a day at a time, and judge the outcomes in 5 year periods. Try to come to a position of acceptance, so that whilst you may have to obey some of its dictates (e.g. my 8 hrs bedrest a day), the illness does not define you. Don't let it eat your soul as it were; beat it by becoming a better man through it.
jeremy04366 philsey
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I've overcome neuropathy and myopathy to this point, I've been able to reverse both...with both of those bring labled idiopathic. I do have a lazy colon but I'm not giving up on that...I'm thankful that I don't have reflux as that's a big one to control. I was put on 3 months course of ppi which did nothing and totally set my digestion back when it was improving ...now I'm starting all over thanks to ppi as far as digestion. Ppi were honestly my worst experience ever and did so much damage to me. I still get hypersecretion after three months of being off these meds. I so wish gastros would do a pH test to determine if you have acid problems before handing this stuff out like candy.