Burning Tongue Syndrome

**Muriel1147** · 01-09-2012, 08:09 AM

I am a 64 year old woman with IC since 1997. I've learned to live with this devasting disease over time mainly through dietary restrictions. There are times when I can eat some of the forbidden foods and they don't bother my bladder. Then there are other times when I can't put a finger on what has caused my bladder to flare up even though I've not eaten anything I shouldn't have. I'm aware of all the additives, vitamins, etc. that can cause flareups and try and avoid those also. I've tried the various meds prescribed for IC (Atarax, amitriptyline, Phosphasal, and in the beginning had the DMSO installations), but feel if I can do without the meds and just control my IC with diet that's the better way to go.

Now another malady has cropped up in my life since July 2011. It is called Burning Tongue/Mouth Syndrome. It is a burning sensation on the middle of the tongue and around the tip and edges and the inside of your mouth. It's sometimes less painful in the morning and steadily gets worse towards night. I have been to dentists, ENTs, and MDs and most of them have never even heard of this disease (even though the internet web site is full of articles and help forums devoted to BTS.) It can be caused by hypothyroidism, acid relux, diabetes, nerve injury to the mouth, teeth grinding, tongue thrusting, menopause, and of course the old catch all for all the ails you--anxiety. You can be tested to see if any of the above are causing the burning, but if the tests come back negative then its one of those diseases you have to learn to live with (I really hate, hate this kind of diagnosis). I'm wondering if this disease may somehow be tied into IC since a lot of the foods that supposedly can cause an IC flareup can make burning tongue worse also. But since I avoid all or most of the flareup foods I can't understand why my tongue is burning all the time.

It seems that a lot of the people who develop one auto-immune disease then go on to develop other types auto-immune disorders. So my reason for this post is to see if other IC suffers that belong to this forum have this painful disease also and what has helped you deal with it and what are your thoughts on it's connection to IC?

**jen74** · 01-09-2012, 09:33 AM

I got sick back in 2003, not yet with the IC, but with a virus which caused me severe burning in my whole throat/esophagus. It was so bad. I went to many many doctors, even mayo clinic( they were a waste of time and money let me tell you). The only difference was that my throat was extremely inflammed when they looked at it. Still they had no clue what was causing it. I suffered for a long 2 years with this. For me it was constant. I could not even talk due to the severe pain.

Anyhow, fast foward, the burning went away out of the blue. But, then I started getting digestive issues and then came the bladder pain and muscle pains all over my body. So I believe it is all connected somehow. One thing I did notice is that a couple weeks before the severe burnig in my throat, I had gotten a flu shot. I really believe that this may be what started everything. An ENT doctor even suspected the flu shot could have started this whole thing up. I have not gotten a flu shot since, and I never will again after researching what all is in it. They put formeldahyde in it. Chemicals do funny things to the body.

I will say that about 9 months ago my doctor gave me a script for diflucan for a supposed yeast infection. Two days after I was on it I got this burning in my tongue and on my lips. It was terrible. I am sure it was related to some chemical in the drug diflucan. It lasted on and off for over 5 months. Now even when I take certain meds, I will get this burning in my tongue and my lips. My lips will even get irritated kind of red looking. I started taking the generic form of zyrtec. This seemed to help some. I do not have the burning now, but whenever I have to take any type of medication, I will get it. The Diflucan kicked this off inside me. So maybe it is something you are taking? Chemicals can cause alot of odd things to happen in out bodies. Does anything seem to help it, like eating something cold or warm? I am sorry you are dealing with this, I also hate it when doctors have no clue as to what is wrong and tell you that you have to live with it! They should try and live with it and see how it is!! I hope you feel better soon.

Jen

**Muriel1147** · 01-09-2012, 11:45 AM

Thank you Jen for your reply. I'm glad you mentioned your sore throat problems because I forgot to mention that I have those also. About 4 years ago I started having sore throat pain just on the right side of my throat and a feeling of have to swallow all the time. I would have it for a few months and then it would go away, then have it start all over again. I've been to 3 ENTs for this and have had my throat scoped 3 times. They never see anything that would cause the problem. Right before my tongue starting burning in July I had the issue of the sore throat again so I'm sure it's all relating somehow. You give me pause about having a flu shot next year (which I've done every year for years now). I don't believe I'm taking any meds that might cause this (as I've been on the same ones for years--Lipitor, levothyroxin, lorazepam, and vitamins suitable for IC patients). I've changed toothpaste (without SLS, fluoride). Drinking ice water helps somewhat and avoiding rough foods. I think all of us with these strange symptoms and diseases spend a lot of time ruminating over what could have caused our conditions and looking for any possible solution to bring about an end to the problem or at least finding a little relief. Thank goodness there are web sites such as the ICnetwork where you can meet other people who are also suffering from similar problems and you can take comfort from knowing that you are not alone in your suffering.

**NancyB** · 01-09-2012, 12:03 PM

Dear Muriel -

Often Burning Tongue is caused by low levels of estrogen. You might want to talk to your gyno about your symptoms and ask for a trial run of HRT.

Hope this information is helpful to you.

NancyB

**healingthoughts** · 01-09-2012, 12:04 PM

Jen,

Funny that you mentioned the flu shot. My IC symptoms started in 2009 a couple of weeks after I got a flu shot. I haven't had one since then. I suspect the flu shot may have triggered the IC though it may not be the only cause.

I will never get a flu shot again.

**jen74** · 01-09-2012, 02:23 PM

It is odd that alot of people I know have been having issues after getting the flu shot. My mother-in-law wont get it again either. She got sick every year she got one. She got the pneumonia shot last year and came down with pneumonia! Now she says she will never again get that shot either! I remember having this long converstaion with my ENT doctor and he told me that doctors are quick to tell you that the flu shot cannot cause the flu, but they neglect to tell people that there is a possibilty that the flu shot will leave the door open for other stuff to attack you. He said that when you get the flu shot, your body does not know the difference between the shot or the real flu so your body's natural response is to go after it. This then lowers your immune system and leaves the door open for you to pick up other things that can make you sick. This is why so many people get sick from the shot. My dad who is 66 will not get a shot ever again either. He said every time he got the shot, tha whole year he came down with one thing after another! Anyhow, this is why I will never get another one. I hope I do not get the flu, and I wash my hands AlOT. My regular doctor even thinks I shouls Never get one again either. She said anyone with an illness like I have already has a weakend immune system and that getting a flu shot could possibly make me really sick. So no more Flu shots for me after all I learned.

Jen