The Pity Party-Burning Mouth Syndrome

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holohololand
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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.

Instead of focusing on the optimistic side of the coin:

  • It isn’t fatal
  • At least it isn’t cancer
  • My family is supportive
  • Some drugs help
  • I have developed decent coping strategies

I occasionally dip into the pessimistic side:

  • It hurts nearly every day
  • The drug helps but can me drowsy and aimless
  • There is no rhyme or reason to the good days or the bad days
  • Even on good days, my tongue tingles all of the time
  • I think, deep down, I am angry
  • I fear – It. Will. Never. End.
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Internet Interventions-Burning Mouth Syndrome

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_DSC6302I 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 →

BMS and Me

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Burning Mouth CloudBurning Mouth Syndrome (BMS): “Chronic burning pain in your mouth. The pain from burning mouth syndrome may affect your tongue, gums, lips, inside of your cheeks, roof of your mouth, or widespread areas of your whole mouth. The pain can be severe as if you scalded your mouth.”-MayoClinic.com.

ABC News covered it in a piece called “The Mysterious, Agonizing Pain of Burning Mouth Syndrome.” Continue reading →

The Patient Maze-BMS

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cooldesign

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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 →

Defeating the Dragon-Burning Mouth

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depressiondragon

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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 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.
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