Tag Archives: BMS

Burning Mouth and the Humorous Pain Chart

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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 →

Burning Mouth Syndrome – Perspective, Priorities, Progress

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(c) Can Stock Photo / jjvallee

Perspective, priorities, and progress.

They are all connected for the chronic pain sufferer and can affect us both positively and negatively. The powerful thing about this dynamic is that unlike many things we are enduring, we can make a choice.

Your perspective is how you view yourself in relation to your condition.

Are you blaming yourself, whether logically or illogically for your pain? Many people think, “If only I hadn’t done this, or that, things would be different.”

I did this myself in the beginning, actually having dreams about saying no to replacing the caps on my front teeth. Saying no to the endodontist who cracked the root, the oral surgeon who did an unsuccessful apicoectomy, the antibiotics I had to take…oh Lord, it goes on and on. Continue reading →

Grief Unexpressed & How You Can Help

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“Anger can be grief unexpressed.”

I read that somewhere recently and thought, “Wow, I never really thought about it that way.”

I knew that anger is often linked to fear, but didn’t intuitively link it to grief. Most of us know that anger is a stage of grieving before you reach acceptance, but what if you or a friend or family member simply gets stuck there. Is there an appropriate time limit to mourning?

The answer is no.

Those of us who deal with the chronic pain of Burning Mouth Syndrome may go through successive cycles of grief. We grieve that we hurt and don’t know why. Then we grieve the myriad ways our lives have been changed or our activities hampered by pain. Then we grieve that we cannot talk about our pain because it has gone on so long that we feel we are burdening others when we speak of it. That’s a lot of grief, my friends, and I know you have experienced many different and sometimes difficult reactions from your family and friends over the years.

I recently saw a lovely video about helping your grieving loved ones and knew I had to share it with you. Continue reading →

Aimovig, Erenumab, Migraines, Oh My!

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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 →

Burning Mouth Syndrome & Your Teeth

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When your mouth and tongue feel like they are on fire, the last thing you may be thinking of is going for a dental checkup or cleaning. Just the thought of someone messing around in your mouth, poking, prodding, and merely keeping your mouth open for that long can be daunting. But the consequences of leaving your teeth uncleaned and untreated can be so much worse than temporary discomfort.

Trust me.

I suspect my Burning Mouth Syndrome was kickstarted by dental procedures on a tooth that abscessed, had a root canal, an apicoectomy when that didn’t work and when that failed as well, the tooth was eventually surgically extracted along with the one next to it. That’s a lot of trauma at once and I have never believed that the onset of this round of BMS was not connected. I ended up with a beautiful bridge, a roaring case of BMS, and found an excellent dentist who was aware of my situation and treated me with kindness, gentleness, and discernment

I go for checkups and cleanings every six months, and can always call if I am experiencing any pain or discomfort. In nearly ten years, I have not had another cavity or issue due to this regimen and chewing xylitol gum whenever I chew gum.

Will I eventually need a dental procedure? Odds are good.

I have one crown that has its enamel chipped off and another molar that is under close watch, so dental work is definitely in my future, but since my dentist knows my history we are waiting as long as possible to do anything that might have the side effect of worsening the burning. It will be unavoidable at some point, but we talk about it each time I visit and I trust that he will do the right thing at the right time.

So, when is the last time you went for a dental checkup? If it has been over a year, please take this as a reminder to take care of yourself if you possibly can.

Prevention now can keep you from more pain later, and that is always a good thing.

When Burning Mouth Pain Takes Center Stage

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I have been battling oak pollen allergies since the beginning of April. We got a good rain for a day, and a small respite, but the levels are back up in the medium category today and I feel it.

Burning Mouth Syndrome is a foe I have been battling for ten years now (Mother’s Day will mark the 10th anniversary…Yay?) and I have noticed a pattern that arises when I am forced to take decongestants along with my antihistamine because nasal congestion is rocking my world. There is no doubt in my mind that the drying action of the decongestants, although needed and effective for the life-sustaining action of breathing, also irritates the burning neuralgia of BMS. In spite of adding quarts of water to my intake, the pain has been nearly unbearable some days. When added to a string of migraines, triggered by sinus pressure, it has been a tough time.

I found myself looking forward to that next dose of Klonopin/Clonazepam so I could doze, even if I didn’t really have time to do that. To sit in my chair, watching TV with my husband, and just drifting off to sleep where the pain was not present was a gift on those high burning days. But what do you do when you have things to do, people to see, and responsibilities that are not subject to rescheduling? What do you do when there is a once in a lifetime event going on, and you can’t afford to miss it?

You power through.  Continue reading →

Cannabis for Burning Mouth Syndrome?

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As many of us do, I haunt the online forums looking for new information or even unusual coping strategies for Burning Mouth Syndrome.  Interested in learning more about this mysterious chronic oral pain? Check out the BMS Support Website.

As I read the entries, questions, and answers, I realize that many people who are looking for Burning Mouth Syndrome support are not reporting its symptoms. Often, they are reporting much more worrisome symptoms like sores and lesions, extremely dry and cracked tongues, and other varied complaints regarding other parts of their bodies. I find myself thinking over and over, “That is not primary BMS. They need a second opinion and to investigate other underlying disorders.”

You see, primary BMS is invisible. I am not kidding! If a doctor (and believe me, I have had quite a few) looks into my mouth and throat even when I am burning most intensely, they will see nothing unusual. That is a hallmark of this syndrome and if you have visible symptoms, please seek a different diagnosis. It may be another condition that has a cure or medicines that can better treat your symptoms.

Wouldn’t that be great?

The other issue that has been floating around for ages but has gained traction as states have legalized marijuana for medical reasons or in general, is the question, “Could cannabis or CBD oil help with Burning Mouth?” Continue reading →

Revisiting Your Meds – Life With Burning Mouth Syndrome

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Medical FilesMany of us go through what I think of as the “thrashing stage” when we first start experiencing the pain of Burning Mouth Syndrome (BMS). It is a time of anger, sorrow, guilt, and confusion as we try to determine what is going on, why it happened, and what we can do about it. You may have thought, “If only I hadn’t done this, or if only that hadn’t happened…I would not be in pain.” It isn’t logical, but often, neither are we at this stage of our journey. Continue reading →

Happiness and Burning Mouth Syndrome

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glowing face by NejronYesterday as I grabbed my morning coffee at the neighborhood shop, I  spotted an acquaintance. I had seen her around the gym where she is always intense and focused but had only spoken with her once or twice over the years. I said hello and reminded her who I was (You know when you get that feeling that they know they know you but might not remember your name or the context?) and we stood together waiting for our orders.

“My God,” she said, looking at me intently, “You always look so glowing. Why is that?” Continue reading →