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Bill Briggs writes: When Nadia Cwiach speaks, no puffs of smoke emerge with her words. No plumes of flame or popping red embers streak from her lips. Just the faint haze of a Big Apple accent.
But inside Cwiach’s mouth, it’s pure hell: a fiery, scalding sensation coats her tongue, cheeks and day and night. For two years and four months, Cwiach says her entire oral cavity has felt a little like she’s munching on a blazing book of matches while swigging a nice toasty glass of gasoline.
“There are just days where you’re really miserable,” says Cwiach, meaning that some Mondays may feel hotter in there than some Tuesdays. But pretty much every day, it’s a scorcher in there.
Maybe the only soothing thing about Cwiach’s condition is that it has, according to the Mayo Clinic, an official name: Burning Mouth Syndrome. While the Mayo folks are on the case, they can’t figure out the cure – much less the source for the constant internal inferno. By some estimates, it affects about 4 percent of U.S. adults, typically women 50 and older.
According to MayoClinic.com, sufferers are afflicted with a heated, chronic pain that coats their tongue, gums, lips, cheeks, and the roof of their mouth. For some people, the sting increases as the day grows longer. The “primary cause,” the clinic adds, “isn’t known.”
Cwiach, 64, has no family history of the symptoms and received her diagnosis after her doctor, a gastroenterologist, used blood tests and a battery of other exams to rule out every other possible disease, bug or virus.
“They think it’s possibly hormonal, and it strikes mostly postmenopausal women,” said Cwiach, who lives in Stamford, Conn. “So after hearing that, I asked: is there really anything else that women (my age) need?”
From blazing mouths, sarcasm flows.
You’re probably thinking – what about ice cubes or popsicles? She’s tried them. Sucking on those helps “just for that moment.” She’s switched to additive-free toothpastes. She has swished a medicine cabinet full of mouth washes to try to douse the fire. She’s tried eating bland foods. She’s tried eating spicy foods.
“It’s all the same,” she says.
She’s theorized that maybe stress is a factor. But she recently had some tense days at work and the condition didn’t seem to burn any hotter. So Cwiach doesn’t believe her environment is fueling the problem. And her sleeping has not been interrupted.
“When it’s just there and burning, you almost get used to it. You forget about it.”
She’s learned two other bizarre elements about the syndrome. For many people, she says, the condition lasts for about seven years.
And in the final stage, apparently, “it leaves you as abruptly as it comes.”
So she’s looking at 2015, and hoping that’s the coolest year of her life.
Have you ever had a mysterious illness? Tell us about it in the comments.
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Looks like pernicious anemia to me...red, beefy, burning tongue due to a Vitamin B12 deficiency. Very common in older persons and some vegetarians.
my wife has BTS, for about 6 months now, and her md made the same prognosis and after her blood work came back that was not true.
Please consider seeing a NCCAOM board certified Chinese Medicine practitioner who practices acupuncture and herbology.
Chinese medicine has identified some similar patterns long time ago. According to Chinese medicine,your tongue should be tender and red, with a even thin coat of white. A red and dried up tongue without much coat means there is a damage to the Yin and flare up of fire. If there is enough mouisture on the ground, there is no fire on the grasses. Patients may have history of fever, hospital operation, or long time eating problem or stress.
In Chines medicine, Yin and Yang must be harmonized. Yin is the root of Yang. Whenever there is a damage to the Yin, there is a flare up of Yang. It seems odds that you can feel a strong sensation of heat on part of your body without a change in temperature. On the opposite situation, when you touch somebody, you can feel a cold hands, yet the person has a normal body temperature. This heat or cold sensation could reflect a change of chemical substances in our body, maybe hormones, maybe inflammation factors.
The syndrome (we call patterns in chinese medicine) at the tongue does not necessarily mean the problem is caused by disease of the tongue or mouth. It may well reflect the problems on other parts of your body. I guess the problem is on the liver and kidney. Liver is the factory of the body, and everything we eat has to be processed by liver to covert all nutrients to whatever our body need. Liver is also respensible for detoxination of wastes produced by cells in all tissues and organs. Liver can be easily stressed out with emotional changes and overworking. When liver need help, it will come to kidneys. Kidney is the Water element, and liver is the Wood element. Water is the mother of Wood. If liver flare goes up, the fire will end up at the heart. Heart is the element of Fire. Wood generates Fire. Tongue is the window of heart. If there is a fire at the heart, it will show up on the tongue.
In modern meddicines, we always try to isolate and identify specific element that causes the disease, and intervene with large dose of chemical compound. It may work, but can also back fire. Everything in the universe has it own rule. Water will flow from high to low, and day will be followed by night. Human body is a whole functional system, and all our oagans and tissues have to work togather.
If this syndrome is to be treated in chinese medicine, one would have to use herbal medicines to clear fire in the heart, smooth the liver, and suppliment the kidney.
Chinese medicine has identified some similar patterns long time ago. According to Chinese medicine,your tongue should be tender and red, with a even thin coat of white. A red and dried up tongue without much coat means there is a damage to the Yin and flare up of fire. If there is enough mouisture on the ground, there is no fire on the grasses. Patients may have history of fever, hospital operation, or long time eating problem or stress.
In Chines medicine, Yin and Yang must be harmonized. Yin is the root of Yang. Whenever there is a damage to the Yin, there is a flare up of Yang. It seems odds that you can feel a strong sensation of heat on part of your body without a change in temperature. On the opposite situation, when you touch somebody, you can feel a cold hands, yet the person has a normal body temperature. This heat or cold sensation could reflect a change of chemical substances in our body, maybe hormones, maybe inflammation factors.
The syndrome (we call patterns in chinese medicine) at the tongue does not necessarily mean the problem is caused by disease of the tongue or mouth. It may well reflect the problems on other parts of your body. I guess the problem is on the liver and kidney. Liver is the factory of the body, and everything we eat has to be processed by liver to covert all nutrients to whatever our body need. Liver is also respensible for detoxination of wastes produced by cells in all tissues and organs. Liver can be easily stressed out with emotional changes and overworking. When liver need help, it will come to kidneys. Kidney is the Water element, and liver is the Wood element. Water is the mother of Wood. If liver flare goes up, the fire will end up at the heart. Heart is the element of Fire. Wood generates Fire. Tongue is the window of heart. If there is a fire at the heart, it will show up on the tongue.
In modern meddicines, we always try to isolate and identify specific element that causes the disease, and intervene with large dose of chemical compound. It may work, but can also back fire. Everything in the universe has it own rule. Water will flow from high to low, and day will be followed by night. Human body is a whole functional system, and all our oagans and tissues have to work togather.
If this syndrome is to be treated in chinese medicine, one would have to use herbal medicines to clear fire in the heart, smooth the liver, and suppliment the kidney.
I was having a burning mouth for several months. It got progressively worse but not to the extent that this article describes. I made note of when it got worse and I discovered that sugar-free additives seemed to make it worse so I stopped all the sugar-free things I was drinking and eating. No more Splenda or Aspertame. The burning is gone. I was using the Crystal Light in my water now I drink plain water. I was eating sugar-free candy and cookies. Now I eat regular ones but in moderation. All burning is now gone. Someone needs to check on this.
Burning Mouth Syndrome and blisters are 2 different conditions. If your burning mouth also has blisters, you should see a dermatologist or an oral pathologist. Blisters indicate a skin disease that sometimes occurs inside the mouth. A tissue sample is taken to see what it is. Then treatment is available. If your Burning Mouth Syndrome has no blisters, you have a peripheral neuropathy. Medicines that treat peripheral neuropathy can help.
I've had Burning Mouth Syndrome for about five years. The symptoms are just as everyone has described them.
There are two good ways to deal with this!
The first is indeed Clonopin (clonazepam), which is basically a tranquilizer, but does reduce the burning considerably. Even one milligram makes a difference. Caution: Don't take more than two milligrams a day, because a famous side effect of Clonazepam is that too much of it will temporarily impair your memory, both short-term and long-term. But a milligram does work for a few hours. Your doctor can prescribe this.
The other way is to anesthetize the mouth with lidocaine, which is the same anesthetic your dentist applies to your gums before giving you a shot of painkiller. Your doctor can prescribe "Lidocaine Viscous 2% Oral," which comes in 100-milliliter bottles, and it's covered by insurance and by Medicare. You can use it as much as you need to. Sometimes I need it every 4 hours; sometimes every 20 minutes. It varies. But it does take the burning away--it's a miracle. (By the way, don't swallow it.)
The taste of lidocaine is pretty bitter. After the pain is relieved, I usually follow up with diet 7-Up or fruit juice, which doesn't interfere with the relief from the lidocaine.
To everyone who has this problem--please try at least the lidocaine. It's a real life saver for me.
Good luck!
Helene
Glad to hear someone else has this problem. I've been to my family doctor, gastro & dentist. None of them could find a cure. My family doc said to gargle with Maalox. It gives you about 5 min. of relief. To think it will last seven years, I don't know if I can stand it. I've had it for about 1 1/2 years so far. I am going to try the B12 remedy and yeast, can only get better.
My wife had it a couple of years ago. I found some work had been done using R lipoic acid on BMS. After a month on it she slowly started to get better and then in a couple of months she had a complete recovery. Maybe it was time for her to heal anyhow but there is some literature on using RLA on BMS.
I have had BMS for four years. The defining characteristic of it is that patients have been tested for everything -- from B12 deficiency to acid reflux (make sure your doctor checks for that) to thrush, to serious brain problems -- and nothing has been found. Most doctors think it is a neurological problem -- the brain mis-signaling the mouth that there is pain. Some things are known to cause most people trouble: caffeine in coffee and chocolate; super acidic foods. But everyone is different: some people resort to super bland diets, others don't. And some things help: eating (pleasure temporarily blocks the pain signals), chewing any kind of gum, sucking on sugarless mints. A combination of medications -- sometimes off-label use of anti-depressants, sometimes a combination of nerve pain medications like neurontin or lyrica with clonazepam (klonopin) -- seems to help. Early studies on BMS showed that klonopin reduced pain (as one writer above mentioned) but most docs these days prescribe the combination. Other things that help are mild toothpastes (I use children's Crest), keeping the mouth moist (sipplng any kind of cold drink), and ... distraction. My symptoms always go away when I exercise (endorphons plus distraction?). One unusual treatment that hasn't been mentioned here is this: mix a teaspoon of Frank's Hot Sauce with a teaspoon of water and swish in your mouth for a minute or two until the burning is too hot and you need to spit it out; don't swallow. It seems crazy (why fight fire with fire?) but it helps, perhaps because hot sauce is made with chili peppers that are the main ingredient of capsaicin, a nerve pain medication. It seems to block the pain signal -- sometimes for an hour, sometimes for a day. In sum, most patients find a combination of things that works for them, and most feel better as time goes on. If you suffer with BMS, check out a great website where fellow sufferers post their discoveries, talk about what works and what doesn't, and find fellowship with other sufferers. It is www.go4hope.org. When I first read that BMS tends to go away in 5-7 years I thought I would just die. Now I think, wow, I've had this for 4 years: another 1-2 doesn't seem so bad. I just want to think that at some point it will be gone. One can only hope. It's nice to see this painful ailment getting some public attnetion.
ALpha-lipoic acid does seem to work for some people, and studies looked very promising. I tried it for a couple of months and it had no impact on me whatsoever. For some odd reason, this weird malady, which most people experience in very similar ways (burning on the tip of the tongue and the roof of the mouth which is usually not present in the morning but comes on at some point in the course of the day and gets as worse as the day goes along; in bad phases a metallic taste in the mouth and burning on the lips, etc) seems to respond to different treatments. What works for some does not work for others. It is indeed a strange one.
I have had burning mouth syndrome for about fourteen years. I have discussed this with a dermotologist, allergist and internist. I have also researched it myself. It is always "there" in different degrees. All of the possible causes have been ruled out in my case. Most of the time, I am able to ignore the pain. My internist said it may be a nerve pathway disorder. Since, reading these comments I will take more B vitamins in case that may help. When I was first diagnosed, it seemed to be a rare condition and now I hear about it more and more.
Definitely visit http://www.go4hope.org. Fourteen years. My goodness.
I have had swelling of the tongue, lip and throat. First episode in January then nothing until May. Have been to doctor, allergist, hospital ER. Nothing has been diagnosed. Blood tests have been run, everything seems fine. I have eliminated many things trying to find what is causing the problem. Have found nothing. This occurred again in June, July and August. This occurs at night time always. Was told to take benadryl after first episode, then allergist put me on zyrtec once a day. I am going to try seeing a nose, ear throat specialist and see if they can find the problem. If anyone has had this happen to them, would like to have feed back, maybe will find answer.
Try rinsing with milk of magnesia. That has been show to help people with burning mouth syndrome...also B-12 deficiency...get the injections. Pills won't work if you have a shortage. I have a mystery illness too...the chronic fatigue that has been written about today as being possibly related to a mouse virus. It has totally devasted my entire life. I'm going to try filing for disability, but I understand that the SSA is not very sympathetic to this illness.
My mother has had a salty taste in her mouth for 30 years--ever since my father died. She would rub her tongue on her teeth until it was raw. The dentist changed out all her fillings and she had seen several specialist to try to figure out what caused this problem. She wears a cover over her top teeth so that she can't rub her tongue. I've always thought that it was due to stress after loosing my dad but it would be nice to find a cure or at least a therapy that worked. Has anyone heard of this problem?
Ok my finger nails seem to be brown and perhaps slowly peeling off
it doesnt look urgent as i have had it for 2 years now
idk what it is though
Since 2005 a feeling that I can't describe as "hot" keeps invading my mouth. In the beginning I thought it was viscosity of the saliva due to a problem in the glands. Tests belied that theory. Then a doctor in London suggested it was due to sleep apnea. I tried a machine that only altered my dreams. Another doctor I saw in Baltimore diagnosed reflux and prescribed a set of medicines that achieved no change. My dentist insists on considering the issue due to stress and only stress. I tried some pills and the only result I got was more frustration. For 5 years I was and still am feeling that I have more than just saliva in my mouth. As if I were chewing glue that becomes hard and elastic during the day. I asked for a scan to determine whether there is a communication between the mouth and the sinus. Doctors interpreted whatever they saw then in a very vague way and I couldn't figure out a clear answer. Are there any similar precedents to my "sticking saliva' case?
I had a milder version of "burning mouth syndrome" happen suddenly. I am 43 years old, male, otherwise in excellent health (I workout 5-6 days week, 3 of which are rockclimbing, the rest some combo of swimming, biking and running.) I eat well, am not overweight, and I don't take any medications.
Despite all that, about 6 months ago my tongue and mouth suddenly started feeling like I had drink scalding hot coffee, for no apparent reason.
My acupuncturist treated me for this and it helped some, but not nearly enough. He eventually came up with some Chinese herbs that worked pretty well, but not all the time.
What eventually worked: black bean water. You boil black beans, drain the beans, and keep the water they were cooked in. Then drink some of the water (You can eat the beans or throw them away.) At first it tasted pretty bad to me, but I've become used to it now and find it refreshing. I dilute the bean water with water so it's not so strong. About 2-3 oz per day diluted in water does the trick.
Initially I drank it several times a day. The heat was reduced significantly right away, although not completely, and over several months it went down to nothing. Now I even find myself skipping a day or two because there is no pain, so I forget that i need anything. It will still come back some if I don't have bb water for 5 -7 days, but the level is much reduced. I am sure it will go away completely over time.
(btw, the black bean water only lasts 3 days at most in the fridge, then it's gross. Now I freeze in small mason jars what I can't drink the first day, and defrost the rest when i need it.)
Hope that helps some of you!
p.s. I know it sounds crazy, but it worked for me.
I was diagnosed with "burning tongue syndrome" over 2 years ago. I am taking 1800 mgs. of Neurontin and Ativan 0.5 mgs. 3 times per day. I also use Biotene toothpaste. This has helped me considerably. I have sympathy for those who suffer with this. I was told that after menopause, the chemistry balance can be off enough to bring it on, but mostly stresses will play a huge factor in it. My doctor has been attacking the stressors with medication (Ativan) along with Neurontin since it is a neurological problem. Have you tried this regimen yet?
ZINC!!
I have had BMS as well as a battle with canker sores, mouth ulcers, for years. When the symptoms first appear I take 50 - 100 mg of over-the-counter ZINC. This works, for me, better than any prescription I've tried. Take the zinc on a full stomach because it will cause horrific nausea otherwise. On rare I may have to repeat the dosage a second time. Good luck and try ZINC!
About 1 year and 3 months ago a sharp burning sensation began on my tongue and lasted for about 2 weeks and then turned into a severe metallic taste. The taste would be gone in the morning when I woke up but start coming back late in the morning and increasing in intensity until I went to bed. I saw a dentist and 4 doctors, none of which mentioned BMS. I ran accross the illness when it was referenced as a possibility on a blog for someone with similar symptoms. I read some research that a university in Spain had some success treating it with Alpha Lipoic Acid. It is commonly found in health food stores, and internet sites. I started taking 300 mg a day, after 3 days increased to 300mg twice a day and noticed a slight improvement. I then increased it to 300 in the morning, 300 early afternoon, 300 late afternoon, and 600 around 7PM. I don't know if it was coincidence, but the metallic taste was greatly reduced in a short period of time, and in about a month was gone. Maybe it helped, maybe my body had started to heal on its own. I began reducing the amount I take back to 300 mg a day over a couple of weeks. A couple of times I quit taking it and I began to notice a slight metallic taste returning and immediatly started taking it again, as much as 300mg 3 times a day.
If that was me, I would switch to just baking soda for toothpaste, do at least a 5 day water fast, then wean myself back onto food slowly with veggie juices, then raw foods(like eggs, beef, veggies) and lay off of ALL sugar(including sweet veggies/fruits) and grains for a couple months. Does sound like either an allergy or yeast issue. Also, taking in potassium and B vitamins helps with muscle mass.
I get terrible kin sensitivity, not just like skin pain , but when ill just lightly brush against parts of my skin itll feel like im brushing against raw skinless flesh and sting. sometimes i get sharp pains in myheart that cause me to keel over and hold my breath until it passes. pains in my lower abdominal that are getting worse every month. and a pain like and intense growing lain in my leg that can last for hours and sometimes i cant walk, even laying down hurts like the done is growing wrong when i should be done growing as im now 20. also my legs fall asleep about 3 times a day. I dont have insurance and Im scared to go to sleep some nights afraid i wont wake up
A.Luna
My "hot mouth" started when I was about 21. I didn't know why my mouth would feel "hot" some days and not others. It would most often occur at the end of the work day and be accompanied by mild sweating on my cheeks and nose (I called them "hot flashes", not knowing what a real hot flash felt like at the time). I had recently married and moved out of state so my husband could finish school.
Over the years, the "hot mouth" has increased in frequency and intensity, mostly during my 6 pregnancies and a lot of the time after I ate a lot of sugar or drank any kind of citrus or other fruit juice. During my 5th pregnancy, about 3 years ago, it got so intense that I wanted to cut my own tongue out! I had perused the internet before, trying to figure out this mysterious burning and was now desperate to find some answers. After hours of searching and sifting through all the articles about cayenne pepper and the like, I finally came across a small snippet about BMS. It described my misery much better than I'd ever read before.
When my husband, who was in nursing school at the time, came home from class, I told him that I thought I had figured out what that burning sensation in my mouth was. I told him that I thought I had Burning Mouth Syndrome. He gave me that look like "Oh, brother. Here we go again with the crazy internet research". Unbeknownst to me, he went upstairs and secretly looked in one of his nursing books. Sure enough! BMS was in there and IS a real condition!
I will be 34 in December and am in my 33rd week of my 6th pregnancy. I've had on again off again symptoms, but nothing like my last pregnancy. After reading this article, I'm wondering if it's BMS that I have at all. I've had it much longer than 7 years, and it came on when I was 21, not post-menopause. Also, it's not an all day, every day occurrence. Sometimes, it is still brought on by excessive sugar. I have found that if I floss and brush right as I feel it coming on, that it won't stay as long or burn as bad.
I had burning mouth syndrome for years until I had cervical stenosis surgery for a pinched spinal cord in my neck. After the surgery, I no longer had burning mouth syndrome.