NOTE: Although this post will remain on Kali’s OQM Musings, it has been reproduced and future BMS posts will appear on A Burning Journey. Please check it out if you are interested in more about Burning Mouth Syndrome.
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 air waves now.
Many thanks to Charlene Bert and her crew from NPN Media who did a great job and were very sensitive and caring during the process.
Chicago’s CBS Channel 2 coverage was the first I saw and that link is no longer active. There is a subsequent story (January 2014) that ran in Southern California on ABC and another from CBS Miami, and News 4 in Georgia. More recently (February 2014), 19 Action News in Ohio picked up the story and in June, 2014 it appeared in Boston. In December 2014, it resurfaced in Milwaukee. There is one statement in the videos that is not complete. Nerve damage is not actually ruled out in BMS. I have had three diagnostic nerve blocks that failed to relieve my pain, but the specialist informed me that there are many hair-like nerve fibers in the mouth and tongue and there is no way to block them. So, if your BMS is possibly related to dental procedures, as I suspect mine is, there is no way to truly “rule nerve damage out.”
I am not thrilled with my appearance in the video. It is obvious this syndrome has added stress, age and weight to me over the past few years as I cope with it. I know from reading posts from my fellow sufferers on the Facebook Burning Mouth Syndrome (BMS) support group that I am not alone in this. We often only derive complete relief (for a limited time) from eating or drinking and the only long-term relief occurs when we sleep. We take medicines that make us tired and drowsy and often we are affected by varying levels of depression as we realize that this is not going away, we may never know what caused it, and there is no cure.
It is truly a sentence without an end date.
I know that everyone who suffers from chronic pain goes through stages of grief and coping strategies. We are certainly not alone, but that is how it feels at times when family and friends assume your pain is gone because you look fine, are functioning, and are getting on with your life. As I have said before in BMS and Me, “We stop talking about it because there is nothing new to say.”
So, how can you as a friend or family member help? Continue reading