Breaking In a New Doctor – Burning Mouth Syndrome Challenges

Photo by Shopify Partners from Burst

You can find yourself with a new doctor for a variety of reasons. New insurance, moving to a new town, a referral to a pain specialist or Neurologist…these are just a few. In all of these cases, you will need to bring your new doctor up to speed about a chronic neuropathic pain syndrome they may never have heard about.

A Neurologist or pain specialist may have dealt with BMS before and if you have a choice in the matter, try to find one who has. Their experiences may be to your benefit.

However, many of us are caught in that somewhat awkward position of educating our medical professional and it can be daunting if you aren’t prepared.

First, do not let anyone brush you off with an “Oh, it’s just menopause. Or, It’s just a natural part of aging.” Ladies, I am talking to you here in particular, because there is an “older woman” category that we can be placed in and subsequently disregarded a bit if we aren’t careful to speak up. Once that happens, it is difficult to change that mental image of you in your provider’s mind. Speak up and present data if you would like to avoid this, and you should, because it is never productive in searching for diagnosis or treatment.

How do you present data? Good question! 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

Heat and Burning Mouth Syndrome

photo by Pexels

Here’s something that has crept up on me gradually over the years and was greatly masked by the air-conditioned environment I live in. My home is Texas, ya’ll, and so hot summers are the price we pay for moderate winters. It’s expected, and to be frank, if everything wasn’t air-conditioned, I think only the hardiest individuals (along with snakes, scorpions, bugs of many sizes, and lizards) would hang out here much.

Heat and heat indexes (the temperature it really feels like) are what have inched up over the years. Texas fakes you out with the occasional string of 100 degree plus days each summer, and until some source shows you the overall trend over decades, you don’t really get that it is just flat getting hotter! I never enjoyed that aspect of Texas summers (I am a Washington State girl when it comes to temperatures!) but since Burning Mouth Syndrome has become a part of my existence, it is even worse. Going outside for a walk right now is like entering a dryer and breathing oven air for me. The hot wind flares my BMS pain more than anything else I can think of and the flare continues long past when I have retreated into air-conditioning.

Hydration and medicine help, and sometimes I even resort to xylitol discs to moisten my mouth, but often it seems like nothing pushes back that flare until it is ready to retreat. Meanwhile, I throw iced water down like a marathon runner and hope it will end soon.

Does this happen to you? Let me know in the comments!

The BMS-Support website has several articles that deal with ongoing research into the salivary system in Burning Mouth Syndrome sufferers, and although I applaud that scientists and researchers are looking at it, a diagnostic method and treatment option can’t come fast enough.

We are burning up.

Burning Mouth Fantasies

canstockphoto67880648-Marisha

(c) Canstock photo/Marisha

A friend asked the other day how I was doing. Was the burning any better? Had they found any cures?

I assured her that all was the same. I am so grateful for the efficacy of Aimovig in controlling my migraines, but it has, as expected, done nothing for Burning Mouth Syndrome (BMS). The Clonazepam ODT I take twice a day keeps the burning at a level where I can function and only occasionally do I have a flare of a day (or three) where nothing seems to touch the pain level much and staying very hydrated, sleeping and being quiet are the only coping strategies that get me through the day(s).

After we spoke, however, I found myself in a fantasy where I typed the amazing title of a blog post. “Burning Mouth Syndrome Cure is Here!” I was delighted as I daydreamed about a day when we would all descend on our doctors in droves, eager to start the totally fictional therapy that would break us out of the bars of this chronic pain prison. I imagined how gleeful I would be to write that very last post in my “Burning Mouth Journey” as I sent people on to pursue their cure and closed this shop up once and for all.

I even fantasized about what would happen next. Would I keep the blog up so that even people who didn’t find the good news elsewhere would still have somewhere to look? Probably. I would update the BMS-Support Website with a banner and then plan a “coming out” party with all of my friends. Instead of the traditional “coming out,” however, it would be coming out of pain, coming out of the community of chronic pain sufferers, and celebrating for the millions of us who would finally have both an answer and a cure.

Alas, it was only a fantasy.

One to be placed with unicorns coming to frolic outside my highrise window and talking to birds. I would, of course, tell the grackles to get lost! ūüėÄ

So, back to reality and a day of working out, lunch with a friend, and spending a bit of time this afternoon scouring the Internet for any new research, findings, or hope to share with my partner in detective work, Dennis Sharpe. He is the guy who answers your questions on the BMS-Support Website, and if you have been helped at all by the site, give him thanks. And if you come across a study that is recruiting or scientific research that applies specifically to Burning Mouth Syndrome, let us know through the site. We may add your find to the information that is there for everyone!

Wishing you a low-pain day and a good week ahead, my friends.

 

Why Do Chronic Pain Sufferers Hide?

I have suffered from Burning Mouth Syndrome (BMS) since 2008. Yes, I am in my 12th year of chronic pain and there is no end in sight.

If you have read any of this blog, you have an idea of the incredible amount of testing, medicines, and specialists I have run through and you know that I left no stone unturned in searching for a cause, a treatment, a cure, or what I settled for eventually…a diagnosis.

You may be a sufferer, whether Primary BMS (no underlying illness), Secondary BMS (burning due to other illness or treatments), a myriad of other chronic neuropathy illnesses, or you may care for someone who is suffering.

Have you noticed that they often do not talk about it? When you ask how they are, the answer you often get is, “Fine.” This is not untypical. There is something about the sheer persistence of a chronic pain syndrome that makes many of us go underground.

Let’s talk about that.

When we go underground with our pain, we do some potentially destructive things.

  1. We deny our knowledge to the community around us. Whether it is facts about our illness, coping strategies that may help someone else, or helping to define the aspects of our illness that may intrigue researchers, attract funding, and perhaps lead to diagnostic tools, treatment, or a cure; it is all valuable.
  2. We withdraw from the people who care for us, and without proactive communication, we can irreparably damage relationships that could be of vital support.
  3. We discount our importance in the world. Never thought about it that way? You aren’t alone. We feel that we are putting a burden on others when we talk about our pain or we think we are whining when we acknowledge to others that.”No, it hasn’t gone away. I have just gotten better at pasting a smile on my face.” How would you feel if someone you loved hid that very important knowledge or those feelings from you?

Something to chew on, don’t you think?

 

 

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

Eugenol, Nerve Injections, and BMS

Dental Injection

(c) Can Stock Photo / Nejron

A recent literature review article stated researchers were connecting eugenol and other dental pain relievers, nerve injections, and possible damage to the lingual nerve with Burning Mouth Syndrome. Take a look and see what you think, but I have long suspected a link between dental work, oral surgery, and eventual extraction of my front teeth to the resultant burning mouth pain I have suffered for over a decade.

This is not, of course, the only cause possible. There are many people with BMS who have not had dental work done near the time of onset and so other factors must be in play.

When I read this, I looked up eugenol because I had never heard of it. To my surprise, I found it is found in clove oil, cinnamon, nutmeg, and bay leaf but by far the most common use of it is in dental work. When eugenol is used in dental preparations such as surgical pastes, dental packing, and dental cement, it may cause contact stomatitis (cutaneous lesions) and allergic cheilitis (inflammation of the lips). The allergy can be discovered via a patch test. 

I do not recall ever having an allergy patch test done by any of my dentists or other specialists. If you suspect it might be a culprit in your BMS, it is worth asking about. Continue reading

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