My Journey With Burning Mouth Syndrome – Mother’s Day

Mothers Day-Burning Mouth SyndromeNOTE: 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.

Today is Mother’s Day. 

I have received cards and flowers and even a surprise Starbucks coffee from our daughter who lives near us. It is a good day, filled with memories of the two beautiful, bright babies who grew into incredibly cute and inquisitive toddlers, went through their individual awkward teen years and came out the other side as stunning and brilliant young women.

They have thrilled, frightened, frustrated and enthralled me from the beginning and I celebrate today that we have come through their adolescence into warm, loving and mentoring relationships that result in having a great time together. This family laughs a lot!

I am truly blessed.

But this is also an anniversary.  

Seven years ago I started my second and current bout with Burning Mouth Syndrome and it has not left me yet.

Burning Mouth SyndromeFor those who have been suffering from this chronic, diffuse burning pain for decades, a seventh anniversary is underwhelming I am sure. But for me, it has been the longest relationship I have ever had with pain and I have learned so much from the journey.

  • I have learned that I must be my own advocate. I must study, stay informed, and be able to express my medical history in bite-sized chunks that a new specialist (and there is always a new specialist…) can understand and synthesize into a possible treatment plan.
  • I have learned the concept of “ramping” a medication dosage up and down gradually. This is essential to anyone who is trying something new and discovering it either doesn’t work or doesn’t work at that particular dosage. Never simply stop a neurological pain medication unless your doctor specifically tells you to.
  • I have learned that what helps me doesn’t necessarily help everyone, and the best way to express this without making others feel like you are telling them what to do or giving them medical advice is to be specific in your “I message.” —  “When I tried this, it seemed to help me.” “Trying the hot pepper rinse did not help me but may help others.” You get the drift.
  • I have learned that there are things that help and things that irritate, and although I can control for some of these variables, often I will be at the mercy of many things outside my control and I must endure and adapt.
  • I have learned that I am lucky. Lucky to have been diagnosed. Lucky to have medical professionals who care and are open to trying new things to help me. Lucky to live where medical care is encouraged, available, and within my means. Lucky to have found at least one medicine that helps. Lucky to have faith in God, and through this, to have hope.
  • I have learned that I am alone. Others may sympathize or empathize, but unless they have experienced this kind of mysterious chronic pain, it will be impossible for them to understand the incredible persistence of it and the way it underlies your existence every single day. Perhaps that is a good thing because just living life with those you love can allow you to be distracted from the pain from time to time and those intervals are lovely.
  • I have learned that I am NOT alone. There are hundreds of thousands of Burning Mouth Syndrome sufferers around the world, and many don’t even know what it is they are suffering from because they have not found a doctor yet who has made the diagnosis.

So, today I start the eighth year. Maybe it will be the last.

Suffering from Burning Mouth Syndrome? Click on the Burning Mouth Syndrome category in this blog for other related posts.

4 thoughts on “My Journey With Burning Mouth Syndrome – Mother’s Day

  1. Thank you, Kali, for sharing your story. I..all of us BMSers…can surely identify! I had my 6th anniversary in March. Ugh! Well…we all know, we are luckier than many. To me this is simply an inconvenience, however a painful and sometimes debilitating one! Fatigue always accompanies a big bout! Yay for ice cubes, ice cream, gum, hard candy, stinging mouthwash, Tabasco swish, yoga, meditation, water play, and massage!! And a caring husband and wonderful fam and friends! XOPhyllis

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  2. Hi Kali, I was so glad to find your post-‘it gave me hope. I started having burning tongue syndrome about a little over a month ago but then the symptoms went away and today they are back with a vengeance! I am traveling and on vacation with my sisters and hard to be upbeat and social. We just sold house and bought condo -moved to another state- and son was so ill-‘so a lot going on. Wish I felt better. Your post help me realize I am not alone. I have fibro and Tarlov cyst disease also- so many challenges! Best, Elizabeth

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    • Elizabeth,
      So sorry you have joined this group of sufferers, but I have heard anecdotally that many fibromyalgia sufferers develop secondary Burning Mouth Syndrome along the way. Perhaps there is some mechanism in nerve firing that eventually affects the whole body. I had not heard of Tarlov cyst disease, but that does not sound like a lot of fun, either. It is interesting that some rare diseases/syndromes have attracted support and funding for research, while others have not. Do see a neurologist about your burning mouth, and there may be a med that will help you. I am getting so much relief from Klonopin Oral Dissolving Tablets, and although I had taken Klonopin/Clonazepam for many years at varying doses, this form of it is doing the trick for me. I wish you the best of luck, and please don’t hesitate to ask if I can be of any help. Hoping to hear you are out of pain soon!
      Kali’

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