Tag Archives: Burning Mouth Syndrome

Remission? Not So Much-Burning Mouth Syndrome

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My pain had been decreasing, and the distraction of helping others (always a good coping strategy) seemed to be making things even better. I took less medicine and reached for the cold water less frequently as I quenched thirst, not pain.

Then I had my yearly dental checkup and teeth cleaning this week, and although my hygienist was so careful and gentle, the burning is back. As I sit typing this, mid-morning, my tongue feels as painful as ever and my cold drink is by my side as much as possible.

I probably should have known better since I experienced remission once long ago, and it was not a gradual thing at all. I simply woke one morning in London with no pain. I thought the antibiotic I started before leaving on the vacation had worked, and celebrated that it was “over,” but I didn’t really have a clue that I was in remission at the time. I thought I was cured!

So, my Burning Mouth Syndrome friends, the journey continues. I will increase my dose of Clonazepam/Klonopin ODT slightly until this flare subsides, but will go back to the lowest dose as soon as it is possible.

I plan to keep searching and talking with you. I will stay informed by the Burning Mouth Support website as possible research and studies may lead to treatments or cures over time.

Stay tuned, and hold on to hope.

Is This Remission? – Burning Mouth Syndrome

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Gigi & Miles

Last month I speculated that diving full out into caregiving for my adorable grandson Miles had distracted me from my discomfort, leading to less medication because there was less pain.

This month continues this good streak of much lower pain levels, less dryness, and the lowest dose I have ever taken of Clonazepam/Klonopin ODT.

I am beginning to suspect a level of remission is at play here, and although I know from previous experience that remissions in Burning Mouth Syndrome can be of varying time lengths and may be quite temporary, I am going to savor each and every day of this one.

It is a pity that it is occurring just as the Covid19 Delta Variant has taken our area back to social distancing and masks, even for fully vaccinated people, but I am getting lots of time with our local family (Look how Miles has grown!!) and my husband and I would be taking these precautions for our little Cystic Fibrosis Warrior, no matter what.

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Am I Getting Better? – Burning Mouth Syndrome

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In May, I began a “job” again for the first time in about thirty years. I have been working as a volunteer all this time, but it was at my convenience and although there were busy times, it was not a constant or consistent routine.

Now I care for my five-month-old grandson who was diagnosed with Cystic Fibrosis at three weeks old. I drive to my daughter’s home by 7 AM each weekday morning and leave at 3:30 PM to beat the traffic home. (She and her husband work full time, right now at home but increasingly in their offices.) I feed him, change him, bathe him, play with him, and interact except when he naps. While he naps I help around the house with laundry, dishes, and preparing bottles. Now we are beginning solid food and that will be another adventure!

What does this have to do with my Burning Mouth Syndrome pain?

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Year 14 Begins – Burning Mouth Syndrome

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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 regularly, 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.

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COVID Vaccine – Burning Mouth Syndrome

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(c) Can Stock Photo / Nicoletalonescu

I have generally been a strong proponent of vaccines and get my flu shot every year. Knock on wood, flu has not been a visitor at my house for many decades and I would like to keep it that way.

That said, when the vaccines came out, like many of you the first thing I thought was, “What will the COVID vaccine do to my Burning Mouth Syndrome (BMS)?”

We have all tried so many things to relieve our burning, and some may have helped a bit, but we also discovered additional triggers and things that caused flares, and so we may have become just a little more wary than our neighbors. Not because we don’t trust science, and not because we have hard held beliefs for or against vaccinations, but simply because we don’t want to hurt more.

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Winter Dryness and Burning Mouth Syndrome

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Icy Winter
(c) Can Stock Photo / Ariec

Winter is not even close to over and the entire nation has had a big dose of icy temperatures, slippery roads, and overworked heaters. Heaters and furnaces do a good job of keeping us warm (when they work and you are not having rolling blackouts) but they also turn the air we breathe dry as the Sahara on a hot day.

Dry air and dry tongues are anathema to Burning Mouth Syndrome (BMS) sufferers and can increase our burning sensation and even bring on flares that take time to subside.

What can we do?

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Been There-Got the BMS T-Shirt

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I have mentioned before in this blog that Burning Mouth Syndrome (BMS) gets little attention from the medical community and the world at large.

After all, it won’t kill you. At least not directly.

Recently, a friend sent me a link to an Etsy shop that is run by a Burning Mouth Syndrome sufferer and I was so excited to see something so important to me finally being recognized. These designs are not official. After all, there is no BMS Foundation or nonprofit to run things through, and although some of the Facebook Support groups have come up with some things, there is no slogan or logo that universally makes you say, “Oh yeah, that’s Burning Mouth Syndrome!”

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Checkups in COVID 19 Country

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(c) CanStock Photo / dacasdo

I started to write this as an update for Burning Mouth in the Time of COVID 19, but I realized it would be too long. Feel free to read that previous post since it lays out my thinking about checkups in a pandemic! Many doctors and specialists are moving to a mix of virtual and live appointments and for the most part, I think that may very well be the way of the future. However, if you have something they need to see, test, or feel to diagnose, don’t hesitate to press for an in-person appointment. They have protocols and PPE and are doing a great job of keeping everyone safe. Ask ahead what the procedures are, and you will either be reassured or decide to switch doctors!

That said, here is my update and what I experienced as I tried to catch up on my checkups.

The Annual Physical was protected and easy, and I was so glad I went in person (We have done a virtual follow up appointment.) because the little itchy, burning rash I had developed on my gluteus was not prickly heat. It was shingles! It was so mild because I had taken the Shingrex vaccine, but it gave me a hint of how extremely painful that could be.

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Stress and Burning Mouth Syndrome

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Stress. We know it makes our chronic neuropathic pain worse. Our pain increases as stress rises, which increases pain, which increases stress…and well, you know the rest.

It’s an automated answering system from Hell, with no readily visible pound sign to hit to get a live person on the line. Or is it?

Stress is coming at us from all sides now, from the worries and complications of the pandemic to the feelings and actions we are experiencing about racial equality and equity. We are not alone in our stress by any means, but chronic pain sufferers can be triggered in more than one way by it.

I admit that I resisted counseling at the beginning of my Burning Mouth Syndrome journey. I had an instinctively negative reaction to the assumption that this pain was “all in my head,” or that therapy could or would help. It also felt suspiciously like I was getting shuffled off into the “menopausal female” box where any aches or pains or issues were part of the incredibly mysterious malady that seemed to be menopause. As a strong and independent female, I rejected this categorization and marginalization and started fighting back.

How? Continue reading →