Is This Remission? – Burning Mouth Syndrome

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/Klonipin 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.

Continue reading

Am I Getting Better? – Burning Mouth Syndrome

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?

Continue reading

Burning Mouth In the Time of Covid 19

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

Chronic Pain Scale and Burning Mouth Syndrome

My daughter is a Pediatric RN, currently studying for her Nurse Practitioner exam and we got into a conversation about pain scales. I, like most of you, have always been presented with the standard pain scale by doctors and asked to rate what my usual pain level is and what it was at the time. She pointed out to me that pain measurement has been found to be variable, particularly for chronic pain sufferers.

“Mom, when you have pain all of the time, you have to ignore it to an extent just to function. The more you are able to ignore it, the less accurate that pain scale will be. That is why they have come up with several chronic pain scales,” she said.

Well, that certainly makes sense, doesn’t it? And yet in twelve plus years of chronic pain, I have never been presented with that chronic pain scale. There are many to choose from out there, but here is a side by side comparison that shows you the difference.

Regular Pain Scale

 

Continue reading

Chasing the Clues – Burning Mouth Syndrome

I have gradually synced my neurologist appointments with my eleven anniversaries of BMS membership.

Each Mother’s Day ticks off another year with Burning Mouth Syndrome and I once again experience the joy of celebrating those lovely young women who are my daughters with the sadness that comes with another year of no cure in sight.

I saw my neurologist this week, and there was really nothing new to try so I will continue with my Klonopin/Clonazepam ODT and will keep dealing with the drowsiness side effect it brings.

But no pity party for me this year. Instead, I am focusing on the pain in my life that has been relieved successfully (Migraines practically cured by Aimovig), and some recent studies that indicate that a few researchers around the world are looking at our mysterious syndrome and finding some clues. The Burning Mouth Syndrome Support website just posted a link to a recent article from Scientific Reports titled “Proteomic profiling of whole-saliva reveals a correlation between Burning Mouth Syndrome and the neurotrophin signaling pathway.”

That’s a mouthful, isn’t it? You can read the entire report, along with many other articles, study reports, and abstracts at BMS-Research.

The scientific report article is dense, full of med-talk, science-talk, and many other things that sail over the heads of non-professionals but here is the main idea. Guy Krief, Yaron Haviv, Omer Deutsch, Naama Keshet, Galit Almoznino, Batia Zacks, Aaron Palmon, & Doron J.Aframian wanted to do profiling and bioinformatic analyses of whole-saliva (WS) from BMS patients compared to WS from healthy individuals. Continue reading

Welcome to Burning Mouth Syndrome…Maybe

If you have found this blog, you are probably a Burning Mouth Syndrome sufferer or know someone who is. Perhaps you are someone who only suspects you have BMS and what you have read on the Internet so far is scary, disheartening, and often filled with errors and speculation. Let me set your mind at rest about several things…some will still be disheartening, but that is the reality of this under-diagnosed and often baffling chronic pain.

Burning Mouth Syndrome will not kill you. It is not fatal in itself, but unless people find coping strategies, medicines, and support, it can be as dangerous as any other chronic pain condition. If you don’t get medical treatment and support, chronic pain can lead to depression and even self-harm.

The hallmark of BMS is diffuse burning in the mouth and tongue with no visible symptoms. This means if you have lesions, cracked or geographic tongue, discoloration of the tongue or oral cavity or any other visible symptom…you may be barking up the wrong tree. It is possible to have Burning Mouth Syndrome that is caused by underlying conditions, and you will always do better if you treat those ailments first. Your BMS pain may simply disappear, and wouldn’t that be great? Continue reading

Just Do It – Burning Mouth Syndrome

Dental Procedure

© Can Stock Photo / LoveVision

The day I have feared for so long has arrived.

I recently lost a crown on a lower molar that had a root canal so many years ago I don’t even remember which dentist or endodontist did it. However, he did not do it well and now I am looking at having to undergo a second root canal on it before my present dentist will put a new crown on it. In order to take advantage of the dental insurance we have through my husband’s job, that root canal will have to happen this year.

I know many of you out there lack that luxury and I am sorry. Even with insurance, the temporary crown was not covered and cost over $500. I know there are families out there who do not have that to spare, and their decision might have been to continue to suffer and end up with a tooth extraction eventually. But beyond the cost element, for those of us who suffer from Burning Mouth Syndrome, we know there will be yet another price to pay.

Dental work can cause flare-ups of our burning that can last weeks, months, or even years. Continue reading

Burning Mouth and the Humorous Pain Chart

A friend shared this image today on her Facebook page.

It caught my eye because as chronic pain sufferers, we get asked about our pain level all of the time by a variety of specialists. Burning Mouth Syndrome is a novelty to some doctors we encounter, and a pain chart helps to accurately convey the level of pain you experience and how it affects or inhibits your daily activities. Often it is a range, and with BMS, this is particularly true because our pain escalates throughout the day unless we find coping strategies or medicine that provides some intervention.

This “improved” version adds a bit of humor to the pain scale (bees, bears and ninjas?), but also makes the point that if you are truly at the top-level of pain (10 is the top!) then you are incapacitated or have been rendered unconscious by the level of pain and medical intervention is required immediately.

I was surprised by the comments that accompanied the image. Some laughed, but others were angry, feeling that the image was mocking their pain. Some even took the scale to task for not having enough numbers, because their pain was “at least an 11 or 12!” Others berated the creator for not including labor, even though that is a pain that only affects one gender.

Pain is affected by many factors, and each person’s tolerance and perception is individual but we must be consistent and coherent when talking about our pain levels with medical professionals. Some of the comments came from people in the medical profession and they gently mocked people who claimed they were experiencing a 10 level of pain but were “casually talking on their phone and eating chips.” Continue reading

Aimovig, Erenumab, Migraines, Oh My!

There is a new migraine prevention medicine out there that is causing a lot of excitement in the chronic migraine sufferers of the world. Aimovig/Erenumab is the first and only FDA-approved Calcitonin Gene-Related Peptide (CGRP) receptor blocker and my friends who have been battling debilitating migraine pain for years are eager to try it.

You can learn more about this at Aimovig. It is available by prescription only and right now reports are coming in that the manufacturer has been overwhelmed by the demand and there may be a wait to get this self-injectable monthly migraine preventative.

Will it work for everyone? The magic 8 ball says, “Probably not.”

That is the case for any medication, my friends. It will help some more than others, and often for reasons we don’t know or understand. But it is definitely worth having a conversation with your doctor if you suffer from chronic or episodic migraines and you have tried all of the usual suspects without lasting relief. The manufacturer is careful to say that it will lessen the number of migraines you have, not eliminate them completely.

Now, here’s a question…Could it help with Burning Mouth Syndrome pain? Continue reading