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 →
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 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.
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. Continue reading →
Many of us go through what I think of as the “thrashing stage” when we first start experiencing the pain of Burning Mouth Syndrome (BMS). It is a time of anger, sorrow, guilt, and confusion as we try to determine what is going on, why it happened, and what we can do about it. You may have thought, “If only I hadn’t done this, or if only that hadn’t happened…I would not be in pain.” It isn’t logical, but often, neither are we at this stage of our journey. Continue reading →
Image courtesy of cooldesign/ FreeDigitalPhotos.net
I have been reading about the Affordable Care Act snafus and victories with great interest. Here is a site that has very good coverage: Summary of the Affordable Care Act. I don’t begin to guess how this will all shake out, but from personal experience as a sufferer of Burning Mouth Syndrome, I can tell you that healthcare was a maze, to begin with; and an expensive maze at that!Continue reading →
It breathed its fiery breath on me in 2006 for four months, disappeared as mysteriously as it came and then re-appeared in May of 2008 and has been my constant companion ever since. It is diffuse burning neuralgia that we finally are calling Burning Mouth Syndrome for lack of any closer diagnosis, since it began in the very back of my throat and palate (unusual for BMS) but has now spread to my tongue (typical in BMS). It may have been caused by dental procedures or a variety of things. We may never know.
There is no official cause and there is no cure, only management of the symptoms.
Through a plethora of specialists, medical tests (I won’t go into detail here because they were just too icky in many cases), vocal therapy, gastroenterology procedures, diagnostic nerve blocks, acupuncture, etc., I kept slogging along, hoping for a cure just around the next corner to no avail. Finally, after a year and a half of constant pain that was only relieved by sleeping or drugs that made me very sleepy, I hit a wall and got very depressed and laid down my sword. Continue reading →