Yesterday as I grabbed my morning coffee at the neighborhood shop, I spotted an acquaintance. I had seen her around the gym where she is always intense and focused but had only spoken with her once or twice over the years. I said hello and reminded her who I was (You know when you get that feeling that they know they know you but might not remember your name or the context?) and we stood together waiting for our orders.
“My God,” she said, looking at me intently, “You always look so glowing. Why is that?” Continue reading
I have been writing about Burning Mouth Syndrome (BMS) for years now, and recently a reader reached out to me and said she had been dealing with this chronic pain for over fifteen years. She had read one of my blog posts and has been keeping a pain diary for the first time ever.
“Hallelujah, sister!” I wrote. 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
Image courtesy of holohololand/FreeDigitalPhotos.net
I have been suffering from Burning Mouth Syndrome for nearly six and a half years now.
Every once in a while, what my Neurologist euphemistically refers to as “the persistence of it” overwhelms me and I have a brief, but intense pity party. 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
I told you recently in “The Patient Maze,” that I was filming a video interview about Burning Mouth Syndrome last month, and it is hitting the airwaves now. Continue reading
Image Courtesy of eyehook.com
I have been battling a dragon.
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 a 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 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.