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.

You Can Stop that. It does nothing other than make you feel bad, regretful, and perhaps even a little ashamed, and none of that is truly yours or helpful in any way. We all did what seemed like the right thing at the time and considering BMS is a neuropathic pain syndrome with no sure cause or cure, I think that will always be the case.

Are you depressed because you are depressed? Chronic pain impacts our lives, our relationships, and our bodies in ways that science has not fully explored or explained. Are you disappointed in yourself for being depressed because you have been in pain for so long?

You Can Stop that. Do something about it, whether it is professional counseling, having a discussion with your doctor about antidepressants, acupuncture, massage, or whatever else allows you to feel you are caring for yourself. Consider reaching outside of yourself and actively doing something for someone else. Many have found that is one of the quickest and most efficient ways to lessen their depression. There is something about helping others that stimulates the pleasure centers of our brains, makes us feel better about ourselves, and with regular application, can even make us better people.

Do you make your self-care a priority? 

Many of us don’t. Women can be particularly guilty of this as they may work, run a home, and are often the primary caregivers of both their children and their parents, but men are not to be let off the hook! Both genders can put their self-care routines on hold or never even start them because they feel like too much is going on at work or in the family, and they fail to make it a priority. If you don’t take the time to fill your cup, you will have none left in it to share with others. This is doubly true for chronic pain sufferers and we must care for ourselves so that we are able to care for others. Visit the Burning Mouth Support website for more great ideas about coping strategies and self-care.

Make your doctor appointments and other self-care practices a priority. Plan your other activities and responsibilities around them. They are that important.

Do you feel like you are making progress?

This is such a hard question for chronic pain sufferers. When I consider it personally, I can only say that finding a medicine that takes the edge off the burning has allowed me to coexist with my pain. Is that progress?

I think it is.

In my life, there is good work that has been done, deep conversations that have been had, and precious love expressed that might not have been if I were still thrashing around, looking desperately for something that helped. Your progress may be something different, but I submit that unless you are keeping a record of your pain and looking at it from time to time, you may not notice progress even if it happens. If you haven’t been keeping a pain diary, consider starting one now. You may discover patterns where something has actually helped, but you missed it. Something may be a trigger, but because you have no record over time, you didn’t notice it. Be sure you are keeping track of medicines you try and whether they helped or were just waystations along your journey. I was recently accepted into a migraine medicine trial because I had kept good records of all of the medicines I have tried in my eighteen years of migraines. You never know when you may benefit from the knowledge you are collecting.

Wishing you the best.

 

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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.

Check it out at Refuge in Grief’s video: How to Help a Grieving Friend. There are Spanish and English subtitles you can choose if you need them, and it was a brief and coherent way to convey some very important information.

If I were grieving, I would hope that the person trying to comfort me had seen this video, and if I was comforting someone, I would be glad I had seen it.

Take a moment and check out the awesome power of acknowledgment. It will feel awkward at first; I won’t kid you about that, but it really does help that person you love or care about.

Be radical. Change the paradigm.

If you are dealing with chronic pain, tell your family and friends that they need to let things hurt and acknowledge that it hurts instead of trying to fix it, cure it or argue you into happiness.

Share this video and you may adjust expectations all around. 

You can do it, and so can I…so let’s make a choice to handle pain, grief, and sadness differently and start today.

 

 

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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?

Only time and usage will tell. BMS sufferers can be a subset of the larger number of people who suffer from migraines, but some are not. I have had chronic migraines for nearly twenty years and will be trying this medication as soon as my local pharmacy receives it.  I will let you know if I perceive any relief of my primary BMS. This will be anecdotal, of course, and I have no expectation that any research will be done any time soon on this medicine’s effect on other chronic pain syndromes.

Fingers crossed!

September 26, 2018 Update:

I am on my second month of the trial of Aimovig and the first month I had as many, if not more, migraines than usual with more intensity than usual and more breakthrough days where even the double dose of Imitrex did not back my migraine off. My neurologist switched me to Maxalt and that seems to be working but a bit more slowly than Imitrex did. I started the second trial month last Saturday, and so far, no more migraines but the month is not nearly through, so again I will wait and see. This may, however, be the last wait and see for me since my insurance has declined to cover Aimovig and the appeal process is slow.

Did it affect my Burning Mouth pain?

Not that I could tell. There were days when I was ruled more by the 4-5 day long headache, to be sure, but in general, I would say that I did not experience any measurable relief from BMS. Klonopin/Clonazepam ODT is still the answer for me at this point.

Let me know if you have experienced any relief from Aimovig/Erenumab in the comments on this blog!

 

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Burning Mouth Syndrome & Your Teeth

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 a 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 cleaning 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.

 

 

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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