with Nadine Saubers, R.N., B.S.N.
During the course of my CFS journey I also experienced many different additional conditions that only added to my incredible suffering. One of these conditions was Burning Mouth Syndrome (BMS) an idiopathic (unknown cause) condition characterized by a continuous burning and intense pain of the mucosa of the mouth, tongue, lips and oral mucosa. The pain is intense like you’d experience after eating very hot peppers. It also feels like something is lodged between your teeth.
I spent years feeling like my mouth was coated in napalm and it was really difficult to eat or drink. According to my doctors at the time there was nothing wrong with my mouth and it took over 10 years for a dentist to tell me that it was BMS and that medications often cause it.
Around the time I first learned my oral diagnosis was also the time I was first figuring out that medications were really harming me and that I was so ill, nearly to death that I decided to take control of my health and do what I was able to heal myself. While I was working on getting off medications and figuring out my healing formula my mouth also healed and stopped hurting.
The following conditions may produce BMS-like symptoms:
• Candidiasis
• Sjögren Syndrome
• Scleroderma
• GERD
• Anemia
• Diabetes
• Vitamin deficiency (B1, B2, B6, B12, folate, iron)
• Hypothyroidism
• Multiple sclerosis
• Anxiety
• Dehydration
• Mouth breathing/nasal obstruction
• Alcohol-based mouthwash
• Medication reaction (eg, ACE inhibitors, ARBs, antiretrovirals, psychotropic, anticholinergic, clonazepam, chemotherapeutic agents)
• Radiation-induced stomatitis
• Aphthous stomatitis
• Contact stomatitis
• Erosive lichen planus
• Pemphigoid
• Pemphigus
• Geographic tongue
• Mandibular fracture
• Neoplasia
• Impacted teeth
• Infections of bone, teeth, or implants
• Ciguatera neurotoxin exposure
• Chewing tobacco use
• Areca nut extract exposure
• Leukoplakia
• Bacterial infection
For patients with primary burning mouth syndrome (BMS), an estimated 50-66% may have improvement in symptoms after 6-7 years. Spontaneous remission is rare but does occur in roughly 3% of patients. Katharine G Meddles, University of Colorado School of Medicine
So how is it that I was one of the “rare” people that experienced what they call spontaneous remission?
Firstly I have to say it truly makes me feel sick to read recommendations for antidepressants and benzodiazepines to treat conditions such as BMS. If you have BMS I’m sure you’ve read that some recommend Klonopin but I feel STRONGLY that a horrible and seriously painful addiction that you experience from taking Klonopin regularly only adds to your misery. Antidepressants also cause painful side affects and withdrawal.
The fact is that your mouth is connected to your GI tract, so supplementing with Probiotics to heal your stomach and intestines is also going to help heal the entire tract from end to end. Something is amiss in your pain receptors and that needs to heal. In order to heal your cells you have to be diligent about your diet, supplements, hydration, stress reduction, sleep, and rest.
Of course you are anxious when you’re in this type of constant pain. That’s why I recommend meditation, deep breathing, and taking time to enjoy serene environments like walks in nature.
I suggest that you get your hormone levels checked and if you’re deficient then get replacements in the form of bio-identical hormones. Also get your iron and folate levels checked.
Follow the healing formula with a special focus on the alkalizing diet until you see some improvement and then try to follow the 80-20 rule (80% alkalizing).
HEALING FORMULA: Real whole food alkaline diet + restorative sleep + elimination of toxins and stressors + being positive and hopeful + regular graded exercise and pacing + consistency + supplements + time.
Eat a ton of anti-oxidant foods and supplement with greens powders.
Try to get your health care provider to prescribe vitamin B complex and cyanocobalamin injections.
Eliminate caffeine and stay hydrated with clean pure water and herbal tea.
If you have BMS I feel deeply for you and I hope that you can also be in the 3% of people they say recover. It can be done, I know I did it!
posted on July 27, 2010 | 17,788 views | tags: burning mouth syndrome, CFS, CFS recovery, chronic fatigue syndrome, Nadine Saubers, recovery stories
Jeff
July 27, 2010 at 4:21 am
Nadine,
Did you also experience severe scalloping on your tongue. Also, did you have what is called “Crimson Crescents”? Finally, did you also suffer from any unexplained sinus pain?
jeny
July 27, 2010 at 5:38 am
Interesting… I have a mild form of this with MCS. Mine is very obviously triggered by radiation from my computer, though I’m sure other exposures contribute.
What gets me is calling it idiopathic and saying medications cause it, within the same article. This “idiopathic” claim for every chronic illness known to man is a big pet peeve of mine, so reading that made me cringe.
This does sound truly awful. Congrats on taking control and healing yourself.
Zi-O
August 6, 2010 at 4:21 am
I agree congratulations on taking control and your success in healing.
I do many of the things you suggest and I’ve seen improvements; I still have a ways to go though. One of my worst offenders is getting enough rest. AND I still consume too many ~natural~ sweets. I ALSO agree with medication being an offender; I took antidepressants, anti-anxiety, and allergy medication for years plus as a child and young adult a boat load of antibiotics. I feel these contributed to my final MCS meltdown.
Antidepressants are being handed out like candy–when it’s coming to light in the long run they really aren’t that effective and the side effects are not something to be scoffed at. AS a matter of fact many of the side effects are symptoms of MCS.
My heart goes out to anyone suffering with clinical depression it is in a word HELL! And I’m not knocking medication in the fact when seriously depressed it’s often needed to assist in the healing process. I just feel in the long run there are other options that produce better results.
Your Name
September 28, 2010 at 2:02 am
Burning Tongue also identified as glossodynia, oral galvanism, stomatodynia is characterized by the nonstop burning sensation in all part of the tongue. If the burning is near in lips, inner cheeks etc then it is referred as burning mouth. Burning Tongue is precipitated by gum problems, chronic infections, dry mouth etc. Baking soda is very effective in curing Burning Tongue. Baking Soda is also known as Sodium bicarbonate .for more details click burning tongue.
Max
June 16, 2012 at 1:59 pm
Hi Nadine,
I was wondering if your BMS is still gone from your alkaline diet.
I’ve been suffering similar symptoms for about a year. However, my mouth does show signs of irritation. My tongue is a little swollen on the sides also. My lips is slightly red on the edges and my stomach feels tight and uncomfortable most of the time.
I’m about 30 yrs old and for most of my life had what I thought a good diet. However, this consisted mainly of processed foods low calorie lots of diet soda and whey protein. I was focused on calories that’s it.
However, I also have dry skin/eczema. I’m 9 days into my juice fast and the eczema is slowly getting better. My burning stomach and mouth symptoms did not go down though.
Do know how long it took before you saw some relief in your symptoms? days? weeks? or months?
Thanks.
Max
mary chang
October 25, 2012 at 10:32 pm
Have you heard of healing by sound energy? Solfeggio frequencies? YouTube has many websites about them, some are very good, and one of which I personally found truly miraculous: this was an audio CD produced by Justin Holt & Andrea Tteja, at their website which is called INFIN8SPACE. It is called “Chakra Meditation: Solfeggio, Platonic, Carrier Wave Frequencies, Affirmations, Bija Mantras”. I do hope it helps you & others, who are seeking desperately for relief!
Lisa
February 9, 2013 at 10:08 am
I experience BMS about 4 years after going through menopause, which I understand is very typical. I play a wood wind instrument as well and playing became very painful and difficult to control. At the same time BMS appeared my hot flashed suddenly increased and I began having problems with acne. I concluded that hormones were a factor in this, however my “male ” doctor refused to do a hormone level check and insisted that my thyroid levels needed to be checked. Of course my thyroid was fine. I spoke to my dentist and ENT, as well and they said there was no none cause or cure. So, as I suspected, I was on my own. I have discovered that the herbal supplement- Menopause Support made by NOW has made an incredible difference. For the most part it is under control and the pimples and hot flashes are almost gone. If I stop the supplements it comes back. I also experimented with food allergies and I think wheat seems to bother it also.