A New Year with Burning Mouth Syndrome

Another year begins and this summer it will end my twelfth year and start my thirteenth with our little friend, Burning Mouth Syndrome (BMS).  That is a long time, but there are others out there who have suffered longer. Sometimes, much longer.

As we round the corner into 2020, what have we learned?

BMS is still a mystery. There are evidently no celebrities in the world who suffer from it (or at least they aren’t publicizing it). Diagnosis is still one of exclusion and takes dedication, discomfort, time, and resources to achieve. Most importantly, there is no cure in sight.

“Chasing the Cure” TV show, to which many of us submitted case studies for help, has been canceled (as of Jan. 1, 2020), and the BMS Support website continues to scour the globe for recent studies, information, or coping strategies to help. Have you checked it out lately? It’s free (subsidized and maintained by folks who have or whose lives are affected by BMS) and it is the only site we know of that is solely dedicated to this particular malady.

Click on the Research & Studies tab to see the latest information and alert the webmaster if you know of a study, abstract or survey that is not there! Your support is appreciated!

Facebook Support Groups keep growing, and you can join one yourself by just typing “burning mouth syndrome support group” into the Facebook search bar. The largest has over a thousand members and they hail from all over the world. You may find a perspective or coping strategy there you hadn’t considered, and if you are looking for fellow sufferers to talk with, they can be useful. Like any social media, you will find the good, the bad, and the ugly there so always do your research and run any medication-related advice past your physician.

Do you know of any physical support groups for Burning Mouth Syndrome? Let the BMS Support website know and it will be posted as a resource for people in that area.

When we share information, we all win. 

 

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.

 

Dentists & Burning Mouth Syndrome

canstockphoto16774292I am nearing nine years with Burning Mouth Syndrome, and if you have read this blog, you know I have tried many things to control or cure it. So far, the only thing that has been a reliable relief for me is Klonopin/Clonazepam Orally Dissolving Tablets.

Meanwhile, as those of you who suffer from BMS know so well, life goes on and so do regular dental appointments. Even if you don’t correlate the onset of BMS to dental work (many of us do), having someone working on your mouth when you are in pain can still be psychologically challenging. Continue reading

Hide No Longer – Burning Mouth Syndrome

BMS-Support-Website-Home

Yesterday, an old friend reached out to me through Facebook and said she had a friend who was having a “burning tongue,” and she remembered that I had said something about that at some point.

Yes, my friends, this is how awareness often happens. Continue reading