Year 14 Begins – Burning Mouth Syndrome

In addition to celebrating my first Mother’s Day as a grandmother, I am sobered by the fact that this begins my fourteenth year of Burning Mouth Syndrome.

Gigi & Miles!

I never imagined when this journey began that it would last so long and would affect my life so much. Each year at this time, I review and see what I have learned, whether there has been any improvement in my pain, and evaluate how much I have been able to help others who are not as far down this road. I have kept up with the research on the BMS Support website and respond to comments on this blog, and it feels like those are helpful things to do.

2020 was a challenge for everyone. The COVID19 pandemic took the chessboard we usually move around on and tossed it in the air. Sickness, Death, Lockdowns, Masks, Respirators, Ventilators, PPE, Social Distancing, and more, all became a part of the pandemic landscape and our new vocabulary. The folks who dealt with chronic pain and illness had to find a new level of coping skills and count ourselves lucky that it wasn’t worse if we were able to avoid COVID.

2021 started out very hopeful with the advent of incredibly effective vaccines, but the rollout was uneven and slow, frustrating even the most patient of us. Then the variants began popping up around the world, inevitable but scary, and things were made even more chaotic as disinformation spread and vaccine hesitancy became a thing.

Right now an unspeakably large number of people are sickening and dying in India because they thought the pandemic might be over or at least under control and opened up to political rallies, large weddings, and religious festivals. It was too soon and the medical infrastructure cannot sustain it. Don’t think this can’t happen in America, because despite being the most vaccinated nation in the world, we are still far below the threshold that would defeat COVID and it most certainly could happen here. Epidemic experts say that it will more likely mean that COVID is with us to stay, and we will probably have boosters each year with our flu shots to deal with the variants that will keep springing up as the majority of our population remains unvaccinated.

This year of Burning Mouth Syndrome has resulted in no change on that front, but big changes in nearly everything else in my daily life. I continue with my regimen of hydration, rest, and Klonipin/Clonazepam ODT and deal with the flares whenever they occur. There is no treatment or cure on the horizon to my knowledge (or my Neurologist’s) and so the status quo remains.

I distract myself and find joy in my little grandson who was diagnosed at three weeks old with Cystic Fibrosis, a genetic disease that will be with him for the rest of his life, and will make him more susceptible to respiratory illness. Not a great combination with respiratory virus pandemic, so we continue to be very cautious.

Our family will be doing what we can to support this new young family and support the research that has expanded these children’s life expectancies exponentially. There is hope for a cure for Cystic Fibrosis and for all of us who suffer with BMS, I add an additional hope that this might be the last year of Burning Mouth Syndrome.

Wouldn’t that be an awesome thing?

5 thoughts on “Year 14 Begins – Burning Mouth Syndrome

  1. Kali!
    What a great post! Thank you so much for your sharing…for your support.
    Miles is just gorgeous. Life brings many challenges indeed….bless his wee heart..sounds like he has quite the Team to support his journey.
    Indeed it is heartening to see all the vaccinations, still, Miles to go before we relax, but hopeful. I had the 1st one end of March …no date for #2 yet. My BMS is tolerable but constant…mostly lips, with tongue flares….sigh…I am still shaking my head in disbelief..it could be worse, tho.
    Happy Mother’s Day ⚘….and thanks again for your great support. Mxo

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    • Marena,
      Thanks so much! Blogging is often like shouting across the Swiss Alps, hoping that the message or even the echo of it can help someone out there. It is lovely to get your comments and kind words. Take care of yourself, and consider all pampering it is in your budget or ability to do. You deserve it.
      Kali

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  2. Congratulations on the beautiful new grandbaby. Prayers for his health as the family cares for him.
    Thank you for your posts and the information they provide. I have BMS for 4 years. Before the pandemic the burning had decreased a lot with the help of information in your posts.
    Since the pandemic and the stress of worrying about family safety and changing daily life habits to follow to guidlines, the burning has increased greatly.
    I am vaccinated, continuing to follow CDC guidlines and praying that I can get the burning to diminish again.

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    • Ginny,
      I am sorry your burning has increased. I think many of us are experiencing that as the stress has piled up and we have fewer outlets to address it. I hope you are including self-care in your daily habits and don’t be afraid to ask for the help and support you need. I keep making that error, and my husband gently chides me, saying, “We are in this together.” I am so glad you have protected yourself and those you love with the vaccination. Congratulations!
      Thank you for your kind words, and I am biased, but I agree that Miles is truly beautiful. His personality is so sunny and sweet and I am relishing the time with him. It has the added value of distracting me from my pain and my friends say his laugh is the best anti-depressant around! 🙂
      Take good care of yourself and keep in touch. I care how you are doing, and stress can be the enemy of sleep, so be sure you are getting enough rest.
      Kali

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  3. Peggy,
    I will respond to your comments in order. I am not available to answer comments during the day because I am a caregiver for my new grandson Monday through Friday and he is my focus so I am not on the computer at all until I come home late afternoon. Yes, steroids were what my ENT prescribed back when this began, but like you, I found no relief. He even tried a compounded estrogen spray in case that was the issue, but again, no improvement. I have Primary Burning Mouth Syndrome which means there are no underlying causes that can be identified. I begin burning in the morning and that escalates throughout the day. I have started taking my .50 mg of Klonipin/Clonazepam (I am authorized to use up to 1.5 mg per day but am trying to use less since this has gone on so many years.) in the late afternoon and that does lessen and sometimes completely interrupts the pain cycle. Once I get to sleep I have no pain at all and drinking and eating also temporarily lessens or stops the pain while I am doing it. If you have pain 24/7, it is unlikely that you have Primary Burning Mouth Syndrome, which is characterized by the escalation cycle I described and has no visible symptoms whatsoever. I hope I have clarified some things for you.
    Kalí

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