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  • Writer's pictureKevin Maloney

Learning To Thrive With Burning Mouth Syndrome: A Personal Journey


Kevin Maloney sitting on a rock looking out at Crater Lake

A description of Burning Mouth Syndrome


A description of Burning Mouth Syndrome is appropriate as it is a rare chronic condition that is not well known. There is no universally accepted definition and no proper diagnostic criteria. A syndrome is a recognizable complex of symptoms and physical findings which indicate a specific condition for which a direct cause is not necessarily understood. Once medical science identifies a causative agent or process with a fairly high degree of certainty, physicians then refer to the process as a disease, not a syndrome.


Burning Mouth Syndrome is characterized by idiopathic (arising spontaneously or from an obscure or unknown cause) burning or painful sensations of the oral mucosa with clinically unchanged appearance. The condition has two clinical forms: primary and secondary. It is considered primary when no identifiable local or systemic factors can be linked to the symptoms. The reported prevalence varies in the research but is typically found in 0.1% to 3.7% of the general population. It appears the majority of those experiencing Burning Mouth Syndrome are post-menopausal women. Since many clinicians are often not sufficiently aware of this condition, it is difficult to estimate the true prevalence in the general population.


My personal experience with Burning Mouth Syndrome


Around five years ago, I believed that I was leading a healthy lifestyle until my body sounded an unexpected alarm that something was wrong. First, an autoimmune disease (Vitiligo) emerged, followed by another autoimmune disease (collagenous colitis) about three months later. Soon after, the first symptoms of Burning Mouth Syndrome appeared, initially localized inside my upper lip. After some research and investigation, I identified the root causes of my autoimmune diseases and managed to put them in remission by modifying my diet and embracing a healthier lifestyle. However, about a year and half after the onset of my initial Burning Mouth Syndrome symptoms, the discomfort extended to the inside of my lower lip.


When people ask me what my symptoms are or what it feels like, it is often difficult for me to fully explain what those are. For me personally, it varies or is a combination of a few sensations. These sensations include a mild burning, numbing, tingling feeling or a “mucosal” taste. It is always present and if I were to give it a number on a 0-10 pain scale, I would rate it as a one or a two most of the time. I count myself fortunate that the discomfort is mostly an annoyance throughout the day, but the sensations will sometimes increase without any correlation that I have been able to find. I empathize deeply with those experiencing greater pain that affects their tongue and other areas of the mouth. This can affect taste, disrupt sleep and hinder daily activities.


Learning how to become resilient and thrive with a Chronic Condition


After I found my personal “why” (you can read my other blog titled “Why I transitioned into health and wellness coaching” to learn more about that) I developed a new purpose. That purpose was to help others who struggle with chronic issues and bring more attention to Burning Mouth Syndrome. I refuse to merely wish for my symptoms to disappear; instead, I embrace a hopeful and optimistic approach that aligns with my “inner” health coach. Part of my path to thriving was realizing that lifestyle is a core component of root cause resolution of chronic disease and a change in lifestyle can empower wellness.


Rather than resisting my circumstances or dwelling on why this happened to me, I shifted my focus toward building a stronger, more resilient version of myself. I did this by leveraging coaching tools like decisional balance, which involves weighing pros and cons, and tapping into my top character strengths (judgment, prudence, self-regulation & love of learning). One great free resource to find your top internal strengths is to take the VIA (values-in-action) character strengths survey located at https://www.viacharacter.org/survey/account/register. I embarked on a series of experiments and was excited about their outcomes. I did not know it at the time, but these experiments were basically what coaches call SMART goals. That acronym stands for Specific, Measurable, Achievable, Relevant and Time-Bound.


Listing all the experiments I have undertaken over the last 5 years would be a very long list. Reflecting on my personal tracking spreadsheet, I am proud of the knowledge gained and the behavior changes I’ve maintained, enabling me to thrive and attain a better state of health and wellness than before the onset of any diseases. My journey continues, with ongoing learning, growth and relentless pursuit of understanding the root cause of my Burning Mouth Syndrome. I remain committed to becoming stronger and more resilient.


Embracing the Support of a Health and Wellness Coach


If you’re ready to prioritize your health and wellness, I encourage you to connect with a coach who resonates with you. A coach can guide you in tapping into your internal strengths and external resources as you navigate your unique journey toward the health and wellness vision you deserve.

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