BMS and Me

Burning Mouth CloudBurning Mouth Syndrome (BMS): “Chronic burning pain in your mouth. The pain from burning mouth syndrome may affect your tongue, gums, lips, inside of your cheeks, roof of your mouth, or widespread areas of your whole mouth. The pain can be severe as if you scalded your mouth.”-MayoClinic.com.

ABC News covered it in a piece called “The Mysterious, Agonizing Pain of Burning Mouth Syndrome.”

There is no conclusively identifiable cause, no assured treatment and definitely no cure.  The few research studies that have been conducted note a correlation between depression and BMS, but neglect to ask,  “Which came first?”  In my case, the BMS definitely caused depression; not the other way around. Researchers suspect dental work, dense nerve tissue in “super tasters,” hormonal links, or neurological damage, but no one knows for sure.  If you are interested in more details, check out Defeating the Dragon.

I have been battling it since May 2008, and after a hectic flurry of exams, specialists, tests and possible diagnoses over the first year or two, we settled on this bizarre syndrome that affects less than 1% of the population.  Oh, how special!

November 2013 Update: Recent news coverage now indicates it is affecting “2-5% of the population,” but the majority are still women in the 50-70 age range. Why are there more sufferers?  I assume because our population is aging and so more are entering that age range.  It does not bode well for the future when more and more of us will be 50-70 years old.  

I will not take you through the gritty details of the last four-plus years but suffice to say, at this point, I merely manage the pain and try to keep its effect on my life to a minimum.  Most days I am fairly successful at that, but occasionally stress or other factors just seem to overwhelm even my best-laid strategies and I must turn to medication.  A small dose of Clonazepam (Klonopin) seems to make me drowsy and interrupts the escalating cycle of pain so that I can get through my evening.

Recently, my acupuncturist recommended trying a Chinese herb called Huang Lian Su.  Studies have shown it to be effective in inflammation.  I have used it for the last few weeks, and seem to be having more of what I consider “good days.”  Good days are when the burning is not overwhelming and often remains at the tingling stage for most, if not all of the day.  However, I cannot use it indefinitely.

The question arises…”Is this a placebo effect?”  My answer is: “Do I care?”  

A recent article asked the question, “Is it the ‘care’ in health care that makes a difference?”  I read it with great interest since I am turning to alternative therapies mixed with traditional Western medicine.  At this stage of the game, I will give anything an honest try.  I have nothing to lose, except perhaps years or even a lifetime of chronic pain.

I know I am not alone, but as those of you out there who have suffered from chronic pain know so well, sometimes it feels like it is just you and your constant companion.  You have told everyone who needed to be told, and there is nothing new to tell, so you stop talking much about it.  When people ask how you are, you say, “Fine.”  And you move on.

I recently decided to talk to a counselor about managing my chronic pain and since I have just started I will not make a blanket endorsement, but I will say, “So far, so good.”

You see, I needed to talk to someone who would not be burdened with my pain. Someone who did not feel for me personally, other than a professional empathy with good boundaries.

Why?

Because I needed to vent without regard for the other person’s feelings, or our future relationship, or any of those considerations that come into play when you talk to people you love, and who love you.

I will let you know how it goes, but in the meantime, if you are dealing with chronic pain, whether it is physical, mental or emotional, I hope you will feel encouraged to reach out and find help and support.  Sometimes your family and friends just aren’t enough, no matter how much they care.

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April 2013 Update:

The Huang Lian Su did not work over time, so I have discontinued it.

And, well, my counselor let me go.  Really.  She said that I was handling chronic pain as well as she had ever seen, and so unless things get bad and I feel like I need it, she was comfortable concluding our sessions.

I know she is right.  There wasn’t much she could recommend that I wasn’t already doing, but she asked incredibly insightful questions and one of them was, “Why do you think you are not still in the ‘Why Me?’ stage?  Many people stay there for years.”  I thought about that a while, and said, “Because I decided not to stay there.  I moved on, did what I could and found strategies to handle the day to day pain and discomfort.  It was definitely a choice.”

My next strategies are an acupuncture protocol that helped some BMS sufferers in Italy (I learned about this on a Facebook group for BMS sufferers – check it out by typing Burning Mouth Syndrome (BMS) into the Facebook search box if you are an FB member!) and weekly B12 shots.  Will they help?  I don’t know yet.  It is too soon to tell.  But I choose to keep trying and I choose to go ahead with my life and plans because my decision is to live my life fully and doing what I love to do.

Wish me luck!

 

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