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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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My burning mouth started in September of 2008. At first I thought that I just burned my tongue with hot pizza, but, it continued on. It started at the tip of my tongue and then progressed to the sides and then the whole mouth. It looked normal, no blisters or redness. I had it checked out with my family doctor which sent me to an Ear, nose and Throat specialist. He confirmed what I had already discovered on the internet. He also suggested that I swish my mouth with a mixture of hot sauce and equal parts of water for a minute or so. This alleviated (or dulled) the pain for an hour of so. I had that with me everywhere I travelled.
I was lucky that the pain subsided when I slept during the night and early morning, but, usually mid morning or noon it would start up again.
As I don't believe in taking any medication, I decided to try out eliminating different things from my diet to see if I could make the pain go away. What I eliminated was coffee, tea, sodas, anything with sugar, or artificial sweetners in it. That worked pretty good, because in February of 2009, it seemed to have gone away, and I didn't have to swish with hot sauce as much and stopped most of the time, unless I got really stressed. That lasted only until September of 2009 when it all started again. Perhaps, it returned because I started including the sugars in my diet.
So, back again I started eliminating the foods that I thought prompted the burning. This time, I decided to eliminate all wheat products as well as the other foods. So my diet mostly consists of fruits, veggies, some dairy, and meats. I really miss the wheat products, but, try to replace my cravings with rice cakes, & rye crackers. I also use biotene toothpast and biotene mouth wash. Also, during the night my mouth gets really dry sometimes, so I use the Biotene Oral balance dry mouth moisturizer.
I know it's a sacrifice giving up all the things that I really loved to eat, but, it's worth not having the pain in my mouth all the time. Now, so far, it's been pretty good, at least it's bearable. Some days no pain at all, however, if I slip up and have an ice cream, I have to suffer the next day.
I sure hope that they find a cure soon. I'm really tired of this and want to get my life back. And I hope that it's true, that it will go away after 7 years???? I hope so, I think that I could put up with it until then, if that is true. However, it's not as bad as it was at the beginning.
I found the website, http://go4hope.org really helped. I didn't feel alone in this condition as many people on this website had this and shared their experiences. Even, some men. Hope this helps
I'm currently at the tail end of some oral discomfort I've had for 2 months now. Out of the blue, I developed extreme dryness of the lips, whiteness in the corners of my lips and some roughness inside my cheeks. I looked online to see if I could trace my symptoms.
Flakiness on lips due to constant balming, some discoloration due to rubbing. eating certain foods--citrus, etc., especially discomforting.
I used all sorts of lip balms to no avail. Castor oil, organic balms, etc.
I first went to my GP who gave a blood test to determine if I was diabetic, then prescribed Magic Mouthwash, XYZAL and a chest MRI.
Took XYZAL for a few days, no change.
Still bothered, went to my ENT (who discounted the XYZAL), found no ulcers, some GERD, prescribed chest Xrays, which I cancelled. Suggested lanolin for lips (worsened after 2 days).
Finally went to dermatologist. By now, clearing up (wish I'd gone sooner to get better understanding of what caused this)--dismissed castor oil and lanolin prescribed hydrocortisone cream, that seemed to worsen also; a dental paste for inside my cheeks to use for 7 days; and another cream for corners of my lips. Derma discounted purpose of getting chest xrays that ENT prescribed.
What seemed to work the best thru all this is Blistex' Lip Medex I picked up at drug store.
Still no clue what brought this on.
Initially, thought it was allergic reaction to something. I had been drinking copious amounts of Sobe vitamin water prior to this; had started taking Glucosimine and chondroiton tablets and was using Burt's Bee's toothpaste. Stopped doing all 3 for weeks, but nothing cleared.
I developed a neuropathy in my leg 5 years ago and was prescribed Lyrica (an antidepressant) to relieve the pain. I developed Burning Mouth Syndrome after only three days and still have it. It has abated somewhat over time, but still flares up to an almost intolerable level occasionally. Nothing I ever tried had any effect at all. None of the many doctors I consulted knew anything about BMS. This is the first time I ever heard of the 7 year rule... I hope it's true.
When I was younger I had gotten a rash ( it was kind of lacey and all over my body ) I went to the doctor for it and they said "Oh yeah that is 5th's disease." I had never heard of it and they couldn't tell me much about it, but it was just a rash and they gave me meds and it went away but it was just kind of weird. Also I have never had the chicken pox.
After reaching a bit more I have discovered that antidepressants, stomach acid blockers (PPIs) and your own sweat can bring on syptoms.
Porphyria — Comprehensive overview covers causes, symptoms, treatment of disorders involving the substance heme.
Definition
Porphyria refers to a group of disorders that result in a buildup of chemicals called porphyrins in your body. Although porphyrins are normal body chemicals, it's not normal for them to build up. The cause is usually an inherited mutation.
Porphyria typically affects your nervous system or skin or both. The specific signs and symptoms of porphyria depend on which of your genes is abnormal.
Treatment depends on the type of porphyria you have. Although porphyria can't be cured, certain lifestyle changes may help you manage your porphyria.
Symptoms
Porphyria is generally divided into two categories:
Specific signs and symptoms depend on the type of porphyria you have, but common signs and symptoms of porphyria include:
Acute porphyrias
Porphyria — Comprehensive overview covers causes, symptoms, treatment of disorders involving the substance heme.
Definition
Porphyria refers to a group of disorders that result in a buildup of chemicals called porphyrins in your body. Although porphyrins are normal body chemicals, it's not normal for them to build up. The cause is usually an inherited mutation.
Porphyria typically affects your nervous system or skin or both. The specific signs and symptoms of porphyria depend on which of your genes is abnormal.
Treatment depends on the type of porphyria you have. Although porphyria can't be cured, certain lifestyle changes may help you manage your porphyria.
Symptoms
Porphyria is generally divided into two categories:
Specific signs and symptoms depend on the type of porphyria you have, but common signs and symptoms of porphyria include:
Acute porphyrias
Phrenaton is made in pill form and is very easy to swallow with water. The normal dose is one tablet per day at a fixed time after a meal. In other words, you may take one pill daily after lunch or one pill daily after dinner or similarly one pill daily after breakfast. The choice is yours. If you miss a dose, take it after the next meal. The following day, you can go back to your old routine. Frequently skipping pills or delaying you dose should be avoided.
Not exactly the same thing but while pregnant with my daughter I developed a strange red rash and burning sensation in my mouth and mainly on my tongue. It came in streaks and swirls and it would change shape and move around on my tongue and the inside of my mouth. The affected areas were painful and sensitive to almost everything I ate, especially spicy food. My OB/GYN called it "Geographic Mouth". I still had it several months after the baby's birth but it finally went away, thank goodness!
Nothing compared to what people with BMS go through...my thought and prayers are with them.
Has anyone thought to ask if it is thrush? I had a similar thing happen and it turned out to be thrush.
My mother has been struggling with this for years. I am really afraid that she is becoming suicidal because of the chronic pain and lack of answers. She is currently taking alpha lipoeic acid, folic acid and B-12 shots, but the burning continues.
Does anyone know of a specialist in Southern California? I am desperate!