Speak Out – Burning Mouth Syndrome

© Can Stock Photo / rmarmion

I have read quite a bit about this mysterious pain syndrome that has affected over ten years of my life and recently I read a review from the Cochrane Library site that clarified something for me. Here, see what you think.

“Authors’ conclusions: 

Given BMS’ potentially disabling nature, the need to identify effective modes of treatment for sufferers is vital. Due to the limited number of clinical trials at low risk of bias, there is insufficient evidence to support or refute the use of any interventions in managing BMS. Further clinical trials, with improved methodology and standardized outcome sets, are required in order to establish which treatments are effective. Future studies are encouraged to assess the role of treatments used in other neuropathic pain conditions and psychological therapies in the treatment of BMS.”

In all of my reading, the low numbers involved in various studies have given me pause, but the Cochrane Library actually considers many studies to contain bias in the study structure. Not to mention, of course, there just aren’t that many of them.

It is no wonder that little progress has been made in even the very first step our Burning Mouth Journeys…diagnosis.

I don’t mean to lower your spirits or hope. We should have both, but unlike other neuropathic pain syndromes that have celebrity spokespeople, foundations or nonprofits to raise money for research, or even a decent percentage of name recognition in the medical community, Burning Mouth Syndrome has none of these. We only have a website that posts credible, updated information after review and coping strategies because volunteers pay for and maintain it. We only have Facebook support groups (some more evidence-based than others) because volunteers have created and donate their time and energy to fostering them.

What can we do about this? Here’s one suggestion that will be easy for some and very difficult for others.

Talk About It.

Take the time to explain what you know about Burning Mouth Syndrome to your friends, your family, your Facebook, Instagram, or other social media circles, and raise awareness. I have lost count of the doctors, specialists, friends, and colleagues I have educated about this chronic pain and I know there will be many more. You never know when that casual conversation you have with someone about BMS may turn into a critical contact that will lead a researcher to this particular disease, encourage another sufferer you don’t even know, or simply erase one more blank stare in the general population as they discover someone they know, or maybe even love, deals with BMS and just never talked about it with them.

Try it, and let me know how it goes. As it stands, we have nothing to lose.

 

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

Burning Mouth Syndrome – Perspective, Priorities, Progress

(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

“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!

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

When Burning Mouth Pain Takes Center Stage

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?

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

Burning Mouth & Nothing New to Say

Ogg Rourke Wedding PartyI realized I haven’t posted since the holidays, and I could easily blame that on everything that has gone on…the wedding in November of our younger daughter went beautifully and just this month they surprised us with the house they are purchasing, our older daughter’s wedding approaches (so quickly!) in May and they have begun to build a house not too far away from us, and of course the day-to-day work of a being a busy philanthropist and volunteer!

Did I mention I am taking on another blog editing gig?? 😀 Continue reading