My mouth is on fire! Having tongue and palate flares

Symptoms and Treatments
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Just when I thought there was no where left to flare,my tongue, lips and palate are on fire They feel and look like they have been badly scalded, sense of taste is distorted (metallic like), i have severe xerostomia (dry mouth) and horrible sore patches. How so miserably painful !.

Was initially dismissed ( ie: its due to psychogenic factors 'all in my head'), and told to go away and suck ice, chew gum and sip iced water - none of which helped. However, this is not just 'flaring' now its like some infection. Visit to my dentist this week has revealed that I am not crazy and that I have real bad 'burning mouth syndrome' (BMS). Whilst she said it was idiopathic , I am convinced that its all part of my systemic EM or fibromyalgic . EM is definitely an enigma!.

Obviously, yet more challenges in terms of diagnosis and management ,but no big surprise that patients with BMS have a trigeminal small-fiber sensory neuropathy. These findings resemble the picture of the "burning feet syndrome" associated with loss of epidermal nerve fibers. BMS sufferers show a decreased density of unmyelinated nerve fibers within the epithelium as well as diffuse axonal derangement. Not prescribed anything new further to the benzodiazepines, gabapentin and amitryptyline that I already have in my arsenal of medications.Just to add that many fibromyalgia, lupus and sjorgrens sufferers report severe BMS.

Does anyone else have this and , if so, have you found anything that helps?.

Have uploaded research/links rather than go into all the details of epidemiology and symptoms.

Burning mouth and menopause

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3570906/

Burning mouth syndrome

http://emedicine.medscape.com/article/1508869-overview

145-BurningmouthsyndromeIndianJPain29124897545_133615.pdf (377 KB) 146-Burningmouthanenigma2011.pdf (79.4 KB)
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Hi,
Have you been tested for Lupus? This looks a lot like the mouth sores Lupus patients get, along with dry mouth and eyes. I get smaller mouth ulcers but not this bad! So I guess citrus is out of the question at this point…
Ouch!

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I too have this. As a matter of fact my mouth was one of my first body parts to burn. I too was told I was crazy but they did give me something called magic mouthwash in the U.S. it is mouth rinse with lidocaine in it. It basically numbs your mouth for a while like you might experience at the dentist.
When is really bad I have to rinse with this before I can eat anything. It’s a dangerous task because you are at risk of biting yourself so you have to be extra slow and careful while chewing.
I hope you are able to find something that helps you soon.

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Yes, I have had so many episodes of BMS..Though have gotten better over the last couple of years..... And hope these aren't your own personal pictures, as I haven't had anything that looked like this with my BMS, or not this bad..You might consider contacting a physician to get tested for Sjogren's syndrome ( an allergist told me they take a sample of your lip for that, so I decided against it for myself)....Yes, BMS can be so very painful, if not worse than I think EM, & too,, my EM flares aren't as frequent as they used to be either......I had a lot of dental work over the years like excessive digital x-rays & too, the other old type,, about 4 dental CT cone-beams, lots of panoramas root canals, titanium implants... Though, this might of contributed to it...Since I haven't had too much of that going on 3 years... My BMS seems to be getting better...Though, too, am post-menopausal...I think it started it all about 7 yrs years prior, before I went through menopause...Try using Burt's Bees Honey (natural throat drops) drops,,Recently been using these, which also help a little with dry mouth, which, I do, experience, & seem somewhat beneficial for my flairs, compared to what I tried with other drops...Keep hydrated with water, that you can tolerate ....And, switch or dilute your mouthwash with water, if it contains alcohol.....Or just purchase one without alcohol might be best. ...Try taking a good brand of Alph Lipoic Acid & have found too, occasionally Gaba supplements, too have helped me....Might be a good idea, also,to get your hormone level checked as this might trigger this, too, & your GYN doc might decide to give you an RX....There is a pretty informative Facebook site, maybe more than one now that I belonged to, but not any longer ..I have never taken any RX prescriptions, like tranquilizers & am not in favor of using anything like this for BMS or EM...Though, I know some FB members ( there are women & too, men who have this awful syndrome) I read on there that have found doctors who treat this..Probably oral surgeons & they have been prescribed medications...Good Luck, mads, with this, & do sympathize with you as some BMS flairs can get so bad, like I think you know you are definitely experiencing now & lasts for days on end & really believe that no they are definitely not psychosomatic.. .But, too if under stress, think this & EM can worsen....Take Care.

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Oh my goodness - wow - I have not heard of this at all but I have it. I thought it was a result of coming off medication or a new one or possibly a Candida infection. Thinking back this was my first symptom or "flare" when the weather was extremely hot and humid and my mouth felt on fire. I did not put this all together until just now. I feel Overwhelmed

Also red lumps on the back of my tongue causing difficulty in swallowing, Burning hot gums. Coated tongue. So distressing - Cleaning my teeth numerous times during the day, drinking heaps of water, gargling with mouth wash, and warm salted water, tongue brushing, taking Pro-biotics each morning with little or no relief. I have a top plate and in desperation have to remove it every afternoon into the evening and leaving it out all night. This makes for more isolation from others.

After seeing my dentist, he referred me to an Oral Specialist - very expensive! At this early stage have not seen him but immense thanks for the links - more info for my Dr.

Is this all related to EM??? please somebody

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While I do not suffer from BMS, I have always had a sensitivity to hot food. By hot, I mean the temperature. (I also do not like spicy foods.) I prefer food mildly warm to room temperature. While other people around me are enjoying their meals, I’m waiting for my food to cool down. Eating food I perceive as too hot is very irritating to my mouth. It creates such a discomfort that I can’t even enjoy my meal. Cold foods are very refreshing to me. I just recently started wondering if there is a connection to EM. I also experience episodes of my stomach feeling hot & I’m very thirsty. This happens on a daily basis. I always carry a bottle of water with me since this sensation is very uncomfortable and can be triggered at any time. Again, I can’t help but wonder if this is connected to EM.

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Oh wow. I’m so sorry to hear you’re going through this. Ive had a few flares similar but not nearly as bad. Mostly my tongue feeling like I’d burnt it and not being able to taste and gums blistering. I showed my doc my tongue and freeked out about the fact that I thought it was linked to what was happening on my feet. He just shook his head and said I needed to calm down and stop panicking. I sometimes feel like he thinks I’m off my rocker. It’s good to know I may not have been losing my marbles, and was maybe on the right track. This is something I’ll keep better track of. Hope you can find some type of relief soon

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Natalia said:

Oh wow. I'm so sorry to hear you're going through this. Ive had a few flares similar but not nearly as bad. Mostly my tongue feeling like I'd burnt it and not being able to taste and gums blistering. I showed my doc my tongue and freeked out about the fact that I thought it was linked to what was happening on my feet. He just shook his head and said I needed to calm down and stop panicking. I sometimes feel like he thinks I'm off my rocker. It's good to know I may not have been losing my marbles, and was maybe on the right track. This is something I'll keep better track of. Hope you can find some type of relief soon
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I am so sorry that every one has to deal with this. My feet and hands burn and hurt so bad. I took a combination of Cymbalta/ Ultram that helped a lot. Was only prescribed for 1 month then just Cymbalta but it alone didn’t help

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Sorry to hear about those EM problems.

My mom had sores, but no EM burning early on.

My mom had sores in her mouth and throat, within the first year of her EM. But she didn't have burning EM symptoms. Her sores resembled thrush which we have seen that babies may get. She was dealing with a fungal infection that was in her body and took anti-fungal agents for that. So she had some mouth problems, but I don't think she has ever had burning mouth syndrome like you're experiencing.

There are some things that she was using to help her dry mouth, some kind of rinse to help with dry mouth issues. Sometimes my mom asks for ice chips, but that's not for burning in her mouth like you're describing as far as I can remember. (Those patches on the tongue look really familiar however. I can recall seeing someone in our house have something like that once, but I can't recall that being related to mom's EM.)

Also:If you ever take anti-fungal medication it can cause the mouth to lose it's sense of taste. I took oral fungal medication for some time for a fungal infection of my foot and everything, even the foods I loved the most tasted like tissue paper.

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Grama Nay Nay,

Hey I'm just wondering. Do you ever mix warm and cold foods while you eat to keep the temperatures moderate. My mom does this and can't have hot foods alone. She doesn't eat really hot foods but she prefers some things to be hot, like hot decaf tea with toast. She often has cold foods like cottage cheeze, sugar free jello or applesauce and eats cold chilled foods with her warmer foods.

Just wondering about "the mix" others might be using.

Grama Nay Nay said:

While I do not suffer from BMS, I have always had a sensitivity to hot food. By hot, I mean the temperature. (I also do not like spicy foods.) I prefer food mildly warm to room temperature. While other people around me are enjoying their meals, I'm waiting for my food to cool down. Eating food I perceive as too hot is very irritating to my mouth. It creates such a discomfort that I can't even enjoy my meal. Cold foods are very refreshing to me. I just recently started wondering if there is a connection to EM. I also experience episodes of my stomach feeling hot & I'm very thirsty. This happens on a daily basis. I always carry a bottle of water with me since this sensation is very uncomfortable and can be triggered at any time. Again, I can't help but wonder if this is connected to EM.
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Hi everyone. I am newly diagnosed with EM and this is my first post. So far, I have just been reading all of your comments and trying to get some idea of how to cope with my flares, and medications etc. My life has been completely turned upside down by this awful condition, which I know all of you can relate to. My story is a very long one. Unfortunately, I don’t have the time to share it all right now, however, mads, when I saw the pictures that you posted of your mouth, immediately, the first one (the top of your tongue) struck me as having a very familiar pattern of erosions. I have a tongue condition that looks so similar to this that I just had to post a response. It’s called Geographic tongue. The erosions form in response to drinking or eating certain kinds of citrus fruit and nuts. My worst trigger foods are unripe bananas, oranges and orange juice, lemons, limes (basically any citrus fruit)pineapple and some nuts like black walnuts and pecans. When I eat these foods my tongue forms circle or oval like erosions with raised edges that are very painful. As a kid, I can remember sticking my tongue under the cold running water from the kitchen faucet in an effort to get the pain (and sometimes itching) to stop. However, I have never had anything that looks like the second picture that you posted. I just had to share this because it looks so similar to what you have shown. I’m wondering if the flares that you are (were) experiencing ever occur or worsen when eating any of these foods.
Am so sorry, what a horrible thing for you to endure. I hope that you are able to find a diagnosis and end the awful pain that you must be experiencing. I don’t have mouth flares with my EM, at least not yet, and pray that I never do. Hope that you find answers and relief very soon, or even better, that you already have found relief in the time since you posted this.
Im so happy to have found this site. I know I will be able to get answers to so many of my questions here, from people who share my experiences with EM. I feel better just knowing that others who suffer with this along with me, are here to help. Thank you.

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For my mouth I swish with haft water and salt - don’t swallow- it is very soothing

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Hi, Watchman

No, I really prefer my food room temperature. I don’t enjoy hot food at all, not even coffee.

Like Vicky, I have had Geographic tongue before. It’s rather bizarre looking.


watchman said:

Grama Nay Nay,

Hey I’m just wondering. Do you ever mix warm and cold foods while you eat to keep the temperatures moderate. My mom does this and can’t have hot foods alone. She doesn’t eat really hot foods but she prefers some things to be hot, like hot decaf tea with toast. She often has cold foods like cottage cheeze, sugar free jello or applesauce and eats cold chilled foods with her warmer foods.

Just wondering about “the mix” others might be using.

Grama Nay Nay said:

While I do not suffer from BMS, I have always had a sensitivity to hot food. By hot, I mean the temperature. (I also do not like spicy foods.) I prefer food mildly warm to room temperature. While other people around me are enjoying their meals, I’m waiting for my food to cool down. Eating food I perceive as too hot is very irritating to my mouth. It creates such a discomfort that I can’t even enjoy my meal. Cold foods are very refreshing to me. I just recently started wondering if there is a connection to EM. I also experience episodes of my stomach feeling hot & I’m very thirsty. This happens on a daily basis. I always carry a bottle of water with me since this sensation is very uncomfortable and can be triggered at any time. Again, I can’t help but wonder if this is connected to EM.

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Mads,
I see that the last posting to this topic was three years ago, but…now I have it. My palate and tongue have their own flares and an ongoing roughness and burning. I have recently been on oral prednisone and inhalers for a lung inflammation and although I rinse after the inhalers, I was thinking it might be thrush, so am using lozenges. I will let you know how it goes. For now, ice chips.

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Dear Michael,
Helen and I are no longer on this site. You know where we are at EM Warriors or email me dear at ■■■■ <3

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erythromelalgiawarriors AT G mail dot com