BMS and Me

 

BMS CloudNOTE: Although this post will remain on Kali’s OQM Musings, it has been reproduced and future BMS posts will appear on A Burning Journey. Please check it out if you are interested in more about Burning Mouth Syndrome.

Burning 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 a 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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24 thoughts on “BMS and Me

  1. I feel like I could have written this but not nearly as well as you… I’ve been suffering on and off for 20 or more years and seem to be going through more bad days than good lately. I’m. now looking for a counselor since I feel like I have exhausted all other options and like you said it’s all been said before to family and friènds. Even though they are sympathetic they really “Don’t get it”. I wish you luck in your journey to recovery and with helping others . If you have any suggestions I would be happy to hear from you.

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    • Hi Mari!
      I am not sure where you are located, but I found my therapist through my insurance company database. Do some research on the ones they indicate are in your area and take your insurance, and be sure to visit their web sites. Call and make an exploratory appointment with the one that seems to be the best fit for you. Mine just happened to be a woman who had lost her hearing as an adult to Meniere’s Disease and she really got my anguish over the impairment of my voice. As I wrote in “Singing Through the Pain,” I eventually overcame that obstacle, but her experience of losing the thing she does best as a therapist and person (listening!) and mine were so similar. She received cochlear implants, by the way, and can hear fine now, but she really understood the frustration I had experienced.
      Will you find that close a fit? Maybe not – after all, that was pretty unusual, but you will find a person who will listen to you cry, curse, have a pity party…and then give you an insight you may never have thought of on your own on how to cope with chronic pain. It is definitely worth a try. Good luck, and let me know how it goes for you.
      Kali’

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  2. Hi Kali…..I am new to all of this and very very stressed and depressed. I exp a burning red mouth during a nebulizer treatment in drs office, turned into a white swollen tongue with burning pain and bitter taste 24/7. I am now on week 4 and treating for thrush even no tests confirmed thrush…i am highly educated and researched this BMS for weeks now. You are the only one I have found who has shown any type of a future. Do you exp burning, bitter taste 24/7? Have you any suggestions on how to cope? I have a very high threshold for pain….but this is the worst and most distracting and debilitating condition i have ever had. I suffer with oa of spine and neck, fivromyalgia and vulvodynia….those are a piece of cake compared to this.

    Any help is most appreciated…..i dont feel like spending the rest of my life in bed. I am only 55 and young at heart.

    D.

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    • Dee, I am so sorry you are experiencing this. Do check out the Burning Mouth Syndrome Support group on Facebook. It will probably tell you far more than you want to know about the amazingly varied experiences we have had with BMS. I have not had the metallic or bitter taste some have, but burning and tingling is all day, every day, except when I sleep.
      Up front, it sounds like yours may be secondary BMS – secondary to your fibromyalgia, specifically. Many fibro sufferers seem to edge into BMS territory at one time or another, but it can also disappear as quickly as it came. Your good news is that the meds you are on for fibro may have good effects on BMS as well, but if this does not clear up soon, contact your Dr. or Neurologist and talk with them about Clonazepam/Klonopin and Gabapentin/Neurontin. These are the two “go-to” drugs that have helped in actual clinical studies. Also discuss going on 600mg a day of Alpha Lipoic Acid if you aren’t already taking it. This is a long term supplement therapy that has helped with nerve damage and pain in clinical studies, as well. Keep sipping iced water, chewing xylitol gum, or anything else that seems to give you relief. And if the depression continues, or worsens, please reach out to your doctor for help. We all seem to hit that trough at some point, and need an additional ear or medication to help. There is no shame in it, only the intelligence to know when you need assistance. Keep in touch and let me know how you are doing and I will keep you in my prayers for relief and remission.
      Kali’

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      • Hi Kali…..thx so much for the reply….i just posted in another location as I couldnt find this one so bare with me. I do not have a neurologist and not sure what I should ask for when it comes to vitamin and genetic testing. I have suffered with Fibro for 30 years many without meds….truly a high tolerance for pain….this BMS is crippling me though. I have just started the Klonopin this week….we shall see. Prior to this, I had taken Klonopin for fibro but reached tolerance and many side effects…..weaned off of it 18 months ago so it is so sad that I am now forced to go back on it.

        Kali i just cant stop blaming myself for going and doing the nebulizer….when many times before I have passed. I almost said no that day and cant help but think if I didnt do it I would be just fine today….i know our minds are our own worst enemy. What helped you??

        D.

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      • Dee,
        As I have written here in the blog, I had to make a personal decision not to let chronic pain rule my life. It can so easily do that, and although I stay open to new therapies and keep trying new strategies to cope, I refuse to let it make me a hermit or keep me from doing the good I know I can do in the world.
        Will this work for everyone? I have no idea, but it truly is what is helping me along with Klonopin and coping strategies.
        It is easy to look back and think that if you had just done something differently, you wouldn’t be suffering, but I am not so sure that is the case. We truly don’t know what causes this (particularly in primary BMS), and the medical community can only throw a variety of treatments at it and see what helps each individual.
        Hindsight may be 20/20. In BMS, you can assume that the nebulizer was your culprit, just as I can assume that dental procedures was mine. We may both be wrong, or partially wrong.
        Whatever the case, there is a saying. “You can’t trip over what is behind you.” Simple, but true, and by going forward, doing what helps us and keeping a positive attitude, I think it makes a difference.
        The other aspect is to keep reducing stress in your life in whatever way works for you. Regular exercise, a good diet, yoga, meditation, acupuncture, massage..whatever works for you. Stress makes this bad boy worse, so do what you can to alleviate it and see if that helps, as well.
        K.

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  3. Hi Kali…..just wanted to stop by and say thanks again….you are an amazing woman with so much love. I will hold onto your suggestions and try to move forward in this journey….where ever that may be. Have a wonderful holiday…..hope you have an opportunity to sing that day. Watched your You Tube video and just love it!!

    D.

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    • Thanks, Dee!
      Happy Thanksgiving to you, too, and I will keep you in prayers for comfort and relief.
      Glad you liked the song! I have been enjoying exercising that side of my inner diva and have been singing pretty regularly at a contemporary worship service at my church. So much fun, and a great way to give praise.
      Take care,
      Kali’

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  4. Hey Kali….i am having a difficult time finding the Facebook link you mentioned above….there are many out there but none that seem legitimate. Hope you can help with this as the bitter taste is just killing me and i am looking for some suggestions to just get through my day….the pain has lessened somewhat. Hope you enjoyed your holiday.

    D.

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    • Dee,
      The holiday was great, but burning was pretty bad for me. No reason why.
      The Facebook support group is Burning Mouth Syndrome (BMS). Put that title in your search box in Facebook and it should pop up. It is a closed group, which means your privacy is as protected as possible, and the group has over 400 members from around the world. There is a library of files with an incredible amount of information, and you will learn as much as they have. Good luck, and I hope you enjoyed your holiday, as well!
      Kali’

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      • Thank you. I did try that hon but couldnt get in….will try again. Sorry to here your pain was that bad….my pain is improving knock on wood…..it is the nauseating bitter 24/7 that makes me so sick. Sending you a healing hug.

        D.

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  5. Found it and tried to join but nothing happened….evryone seems to be added by someone named david?? Maybe i have to be invited…..oh well.

    Thx a bunch.

    Like

    • Strange, when I joined, I just clicked the join button and was informed I was then a member. Facebook must have changed its settings on the groups again. I have sent you an invitation by email and then David Van Duzen will approve it. Let me know if this works! It may be that the link I gave you was for a person who is already a member. If David doesn’t reply quickly, try just searching for Burning Mouth Syndrome (BMS) and there should be a “join group” button up on the left. K.

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  6. Hey Kali…..just wanted to ket you know i am having a problem with my FB so I wint be joining the group right now….if it is ok with u cud i stay in touch via email with u? I have no support system right now and so sick every day….my hubby is stressed and doesnt know how to help so we just dont talk any longer and i try to pretend i am ok when inside i am so so sick…to the point where i wake and suffer with the severe bitter taste 24/7, nausea, stress from it and then i cant wait to take stuff to sleep and go to bed….what kind of life is that? Let me know and i will email you back.

    D.

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  7. I feel the way you do, K, day in and day out. But I, too, won’t let it ruin every day. I employ those remedies, from chewing gum to swishing with Tabasco sauce and water . I take 4 yoga classes a week, I take 2 watercise classes a week. I get regular massages and take daily naps. I m fortunate to have great, understanding friends and a wonderful care- taking husband. I talk to a cognitive therapist. It’s been close to 5 years since BMS came to visit. It followed by 5 months a BIG stressor! I feel the way my doctor does, it’s neurological, a result of trauma. I have hope that it, as my doctor…oral surgeon/physician hopes and believes…that it will burn itself out in time! Can hardly wait.

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  8. BMS has been my constant companion since 1996. I went through every possible doctor, including a very old Chinese practitioner, who prescribed a concoction of herbs, twigs and bones to b made into a tea. It was the most depressing and agonizing year of my life. My dentist told me of a candy brittle that had a good amount of cayenne pepper in it. Cayenne pepper has been my life saver. Sprinkle it in almost everything. The heat of the cayenne has a little arm wrestle with the BMS. Cayenne wins every time. Temporary, sad to say, but wonderful relief. Klonopin – another BMS must. Some doctors will question this but it is a very helpful drug to control this illness. I’ve been on it for almost 20 years – always th same prescription – never abusing. It helps control the outbreaks. I will always hope for a cure. By the way, I’ve had two neck surgeries (disc) and I have a low B-12 . Good luck to all who suffer. It can be controlled and once you know it has a name, you are on your way to reign it in. And right now, I am sipping on a cup of tea with a sprinkle of cayenne – thank goodness for a simple, easy and helpful solution.

    Like

    • Nancy,
      The capsaicin remedy (active ingredient in cayenne, Tobasco, Sriracha, etc.) has been tried by probably thousands of BMS sufferers. Few have derived lasting relief from it, and those who have, often note that it is quite temporary. They note, “It is trading one burn for another, so I guess you get to pick your pain.”
      I am glad it works for you, but I agree that Klonopin/Clonazepam is the most effective thing I have found. It isn’t perfect, but it has been the best and I am able to get by with a minimal dose. Stay tuned to this blog, because there is some exciting research being done in Denver, and as I get more details, I will share them here!
      Best wishes to you, and hopefully your pain will end soon. I am only at 7 years, and have a hard time picturing enduring it for 20. Kudos for staying open to new possibilities and keeping hope in your heart.
      Kali’

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      • I look forward to your blog regarding the research being done in Denver. I pray they come up with a cure. I have suffered with BMS for about 15 years, seems to be getting worst. I was going to try klonopin but got scared by all the side effects listed. Did you have any bad side effects from this drug?

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      • Hi Lucille,
        I hope that we hear more about Denver, but research moves ever so slowly, and even the conclusions they draw may or may not lead to concrete therapies for years. The feedback I got from my friend who has been following this was this quote from the doctor he was corresponding with. “My goal is to publish the results of my systematic review of systematic reviews. Hopefully it will be in the public domain in 2017.” This does not sound like what we were hoping for. There was also a recent abstract published about a woman who had burning mouth syndrome, and when she was tested and treated for HSV-1, the burning went away. It may be worth getting tested to find out if you have HSV-1, but with only one case cited, it is certainly a long shot.

        I am on my 8th year now, and Klonopin/Clonazepam is the only thing I have used that helped take the edge off the burning with no other side effects for me than drowsiness. I just met with my new Neurologist this last week, and although he said there was one more potential med we could throw at this, he really felt that it was worth talking more about what was helping. I have been taking .50 – .75 mg of Klonopin around noon for the last couple of years and although it did not completely remove my burning, it seemed to make it bearable except for the truly bad days. My Dr. suggested that we try upping the dosage to a more therapeutic level, and if it did not help, we could always ramp back down, but he thought it was worth a try. So, as of last week I went to a different dosage and pattern, taking .50mg in the mid-morning when the burning starts for me, and then an additional .75 – 1mg after lunch when the burning usually starts back up in escalation into the early evening. It has not worked every single day, but in the week I have been doing this, I would say it has worked 6 out of 7 days. The most discomfort I am experiencing is a tingle in my tongue, which is exponentially better than what I was feeling before when my tongue and throat burned incessantly.

        Will this work for you? I have no idea and would never recommend that you do anything without consulting with your doctor. I am not an addictive personality and so do not deal with that particular issue, but some people who are, must be very careful. My only side effect is a late afternoon drowsiness that I deal with either with a big glass of iced green tea or a nap if I can fit it in. Hoping for the best for you,

        As I said before, it might be worth discussing with your doctor.
        Good luck!
        Kali’

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