The Ninth Year with BMS

FB Mothers DayMother’s Day is a week away, and for me, that day of celebration is mixed with one more anniversary with Burning Mouth Syndrome (BMS). I have another blog at A Burning Journey that you are welcome to visit if you would like to learn more about this mysterious malady that affects many more people than you would probably guess. Continue reading

Gaming the Pain – Burning Mouth Syndrome

solemn silhouetteNOTE: 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 am continuing the information I shared in “A Pattern of Pain – Burning Mouth Syndrome, so feel free to read that post first if you haven’t already. Continue reading

Internet Interventions – When Someone is Suicidal

sad girlNOTE: 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 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.

Their fellow members jump in and try to help, but it is incredibly difficult to ascertain whether the original poster is truly in a dangerous state of mind, or whether they are just despairing that day, and have opted to put that feeling in a public place. (The page has nearly 500 members from around the world and seems to be growing daily – if you are a BMS sufferer, put Burning Mouth Syndrome (BMS) into the Facebook search and ask to join if you are interested.)

I started thinking about what we should do with information like this on the Internet. How can we intervene constructively?

In the parenting world, we are taught that when someone makes a suicidal statement, you take it seriously. If you are wise, you even prepare that emotional construct by telling your children or other family members that if they ever say something like that, you will take it seriously, and you will get them help.

If a friend made that statement to me, I would make sure that they got to their doctor, and not tomorrow, but today.

But on the Internet, it is a different ball game. You don’t know these people at all, and anything you say may be misinterpreted as criticism or disapproval. (Two things we try to avoid in a support group!) Continue reading

Burning Mouth Syndrome – My Tongue is a Star

Burning Mouth Tongue

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