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. Continue reading
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.
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.
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
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
8 years of chronic burning pain. The anniversary has passed, and so we start on the 9th year.
I have always had this feeling that something good just might come out of all of this mess, and with the help of my friend Dennis from the Facebook Support Group for BMS, I think that “something good” may have made its appearance. Continue reading
As many of you know, I am very close to the 8th anniversary of my second bout with Burning Mouth Syndrome.
A friend I made on the Burning Mouth Syndrome (BMS) Facebook group page named Dennis and I have stayed in contact even after I left the group.
(Trolling is bad, boys and girls; don’t do it because people like me will not hang around for it!)
He became interested in the syndrome after his lovely wife was afflicted, and has been keeping up on research, traveling to multiple specialists, and keeping others informed about any progress toward finding a cause or a cure, no matter how tangential it might be. Continue reading
I have been active on a Facebook Closed Support Group page for Burning Mouth Syndrome sufferers. It is a positive experience most of the time, but occasionally things take a turn for the worse, and I see people posting suicidal thoughts and deep despair. Continue reading