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:
• Sjögren Syndrome
• Vitamin deficiency (B1, B2, B6, B12, folate, iron)
• Multiple sclerosis
• 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
• Geographic tongue
• Mandibular fracture
• Impacted teeth
• Infections of bone, teeth, or implants
• Ciguatera neurotoxin exposure
• Chewing tobacco use
• Areca nut extract exposure
• 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!