Tag Archives: Chronic Pain

Burning Mouth Syndrome and Me

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Photo by Pixabay on Pexels.com

Strange title for a post on a blog that has “One Woman’s Experience with Burning Mouth Syndrome” in its title, right?

But it seems to be necessary at this time of divisiveness and stress to reiterate that this is my experience. Yes, I do reference what little research has been done on this burning neuralgia, and will continue to send people to the BMS Support Website where they can read it themselves.

The truth is that NO ONE KNOWS what causes Burning Mouth. You can suspect dental work (I do personally!), or stress, or vaccines of any kind, or whatever you want to, but again I stress that NO ONE KNOWS.

When I decided to start this blog, it was for two reasons. One was to give me an outlet to say how it was feeling to me and what it was doing to me. Expressing yourself can give some relief. The second was to share what I learned about it, all the things I tried, how I got my diagnosis, and what coping strategies helped me and might help others.

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To Boost or Not to Boost – Burning Mouth Syndrome

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Boosters have been approved and recommended by the CDC, the FDA, and my Doctor.

My 82-year-old Mom got her Pfizer booster as soon as they were approved and after a day of the usual side effects, now feels much safer as she joins her girlfriends for lunch out now and then. Moderna and Johnson & Johnson were next up! Moderna was a half dose, so I went with my Doctor’s recommendation and got the Moderna booster. I had more of the side effect reactions with the booster than I did the second initial dose. Fever, chills, reddening of my injection site area, and swelling of the lymph gland under the injected arm. Not fun, but it gave me a tiny glimpse into how debilitating full-blown COVID could have been for me and this is without any lung symptoms!

I have lung damage from chronic bouts of bronchitis, and that was part of what worried me about getting COVID19 personally. I was not sure my lungs would make it through the damage that the virus can cause.

Now I will not worry as much about that.

People ask, “Does this mean you won’t wear a mask anymore?”

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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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Preparing for the Worst – Burning Mouth Syndrome and Covid

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Masked WomanOne of the three Neurologists who treated me over the years had experience with quite a few cases of Burning Mouth System (BMS) and put mine in his “top five” of well documented and intractable cases. This is not an award I was excited to receive!

He said that like many chronic pain syndromes, “You know it is not fatal and that other people live for decades with it, but what wears you down is the incredible persistence.”

I thought he captured something very relevant. The day after day after day of chronic pain that has its own repeating pattern of escalation and only completely relents when you sleep. It is a wonder that we aren’t all sleep-aid junkies. I have noticed during the pandemic when I have so few things that get me out of the house early in the morning, I am sleeping 8-9 hours a night. It is lovely.

Someone asked me recently if I thought BMS would make COVID-19 worse if I got it. Continue reading →

Burning Mouth In the Time of Covid 19

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If you are here, I assume you know what Burning Mouth Syndrome is, that no one knows exactly what causes it and that there is no cure. If you don’t, this blog is full of descriptions and you can also check out the BMS Support Website.

If you are here, you are probably a BMS sufferer or knows someone who is. This blog is not usually a casual stopping place out there on the Internet.

I’m going to assume that you know about Covid 19 and the global pandemic it has set off and the fact that people with pre-existing conditions are more at risk for severe cases of the illness and even for death.

Is Burning Mouth Syndrome a pre-existing condition that could put you more at risk? The short answer is that if it is primary (in other words, there is not an underlying illness that is causing it), probably not. However, we do end up in doctor’s offices more often and in a world that is avoiding as much contact as possible with other people, and particularly contact with sick people; that is causing a stressful situation for us.

Have you skipped a trip to your Neurologist or Pain Specialist yet? Continue reading →

Inhalers and Burning Mouth Syndrome

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Over the last couple of years, I have become short of breath when walking up steep hills, and have even run out of breath when singing a long phrase or at the end of a sentence. I figured I was just getting older, heavier, slower, but when my sleep apnea was diagnosed the doctor found something else.

My lung capacity had gone down to the point where the drop could be measured.

The next stop on this particular journey is to see a Pulmonologist and so I did. He measured my lung capacity and recommended a chest X-ray which came back with some suspicious shadows at the bottom of both lobes of my lungs.

Off to the radiologist again, but this time for a high-resolution CT. Yes, my friends, these are expensive and since we were still on our deductible for the year it was a large hit to the wallet but worth it since it gave us insight into what had previously been a shadow. Continue reading →