Burning Mouth and the Humorous Pain Chart

A friend shared this image today on her Facebook page.

It caught my eye because as chronic pain sufferers, we get asked about our pain level all of the time by a variety of specialists. Burning Mouth Syndrome is a novelty to some doctors we encounter, and a pain chart helps to accurately convey the level of pain you experience and how it affects or inhibits your daily activities. Often it is a range, and with BMS, this is particularly true because our pain escalates throughout the day unless we find coping strategies or medicine that provides some intervention.

This “improved” version adds a bit of humor to the pain scale (bees, bears and ninjas?), but also makes the point that if you are truly at the top-level of pain (10 is the top!) then you are incapacitated or have been rendered unconscious by the level of pain and medical intervention is required immediately.

I was surprised by the comments that accompanied the image. Some laughed, but others were angry, feeling that the image was mocking their pain. Some even took the scale to task for not having enough numbers, because their pain was “at least an 11 or 12!” Others berated the creator for not including labor, even though that is a pain that only affects one gender.

Pain is affected by many factors, and each person’s tolerance and perception is individual but we must be consistent and coherent when talking about our pain levels with medical professionals. Some of the comments came from people in the medical profession and they gently mocked people who claimed they were experiencing a 10 level of pain but were “casually talking on their phone and eating chips.” Continue reading

When Burning Mouth Pain Takes Center Stage

I have been battling oak pollen allergies since the beginning of April. We got a good rain for a day, and a small respite, but the levels are back up in the medium category today and I feel it.

Burning Mouth Syndrome is a foe I have been battling for ten years now (Mother’s Day will mark the 10th anniversary…Yay?) and I have noticed a pattern that arises when I am forced to take decongestants along with my antihistamine because nasal congestion is rocking my world. There is no doubt in my mind that the drying action of the decongestants, although needed and effective for the life-sustaining action of breathing, also irritates the burning neuralgia of BMS. In spite of adding quarts of water to my intake, the pain has been nearly unbearable some days. When added to a string of migraines, triggered by sinus pressure, it has been a tough time.

I found myself looking forward to that next dose of Klonopin/Clonazepam so I could doze, even if I didn’t really have time to do that. To sit in my chair, watching TV with my husband, and just drifting off to sleep where the pain was not present was a gift on those high burning days. But what do you do when you have things to do, people to see, and responsibilities that are not subject to rescheduling? What do you do when there is a once in a lifetime event going on, and you can’t afford to miss it?

You power through.  Continue reading

Gaming the Pain-Burning Mouth Syndrome

Pensive WomanIf you are here for information about Burning Mouth Syndrome (BMS) and my journey with it, you are in the right place.

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.

I outlined my experience with Klonopin/Clonazepam ODT Dissolving wafers and how much better they seemed to manage my pain. This is still the case, but I wish I could tell you that I was completely out of pain, or better yet, in remission. Neither is true, unfortunately. I have good days and bad days, but fewer bad days than I used to.

A couple of months ago, I became curious about these bad days. They had become more sporadic, but why? What was different on those days that made my usual therapy nearly ineffective? Continue reading

The Pity Party-Burning Mouth Syndrome

holohololand

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