© 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 in 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 donated 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.
A Burning Journey 
Totally agree with all you said. Yesterday I did a google search celebrities burning mouth syndrome — got nothing! Kathy Williams Dx Primary Sjögren’s, trigeminal neuropathy (left side of face), thought to be the cause of my horrific BMS. I have a taste distortion along with it, EVERYTHING I eat has an extreme salty taste. Probably more than you need to know but I’m retired (2 years early) due to Sjögren’s. I think you’re so right about sharing information, I try but people, even some family members just don’t get it.
Thank you
Sent from my iPad
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Kathy,
I am sorry you are dealing with TNS, but I have been told by several neurologists that it is unlikely that it is the cause of your BMS symptoms. However, they acknowledge that if there are other primary causes (Sjogren’s in particular) that they can cause similar symptoms. I hope you are finding coping strategies to help you and thanks for the support!
Kali’
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