Chronic Pain Scale and Burning Mouth Syndrome

My daughter is a Pediatric RN, currently studying for her Nurse Practitioner exam and we got into a conversation about pain scales. I, like most of you, have always been presented with the standard pain scale by doctors and asked to rate what my usual pain level is and what it was at the time. She pointed out to me that pain measurement has been found to be variable, particularly for chronic pain sufferers.

“Mom, when you have pain all of the time, you have to ignore it to an extent just to function. The more you are able to ignore it, the less accurate that pain scale will be. That is why they have come up with several chronic pain scales,” she said.

Well, that certainly makes sense, doesn’t it? And yet in twelve plus years of chronic pain, I have never been presented with that chronic pain scale. There are many to choose from out there, but here is a side by side comparison that shows you the difference.

Regular Pain Scale

 

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Heat and Burning Mouth Syndrome

photo by Pexels

Here’s something that has crept up on me gradually over the years and was greatly masked by the air-conditioned environment I live in. My home is Texas, ya’ll, and so hot summers are the price we pay for moderate winters. It’s expected, and to be frank, if everything wasn’t air-conditioned, I think only the hardiest individuals (along with snakes, scorpions, bugs of many sizes, and lizards) would hang out here much.

Heat and heat indexes (the temperature it really feels like) are what have inched up over the years. Texas fakes you out with the occasional string of 100 degree plus days each summer, and until some source shows you the overall trend over decades, you don’t really get that it is just flat getting hotter! I never enjoyed that aspect of Texas summers (I am a Washington State girl when it comes to temperatures!) but since Burning Mouth Syndrome has become a part of my existence, it is even worse. Going outside for a walk right now is like entering a dryer and breathing oven air for me. The hot wind flares my BMS pain more than anything else I can think of and the flare continues long past when I have retreated into air-conditioning.

Hydration and medicine help, and sometimes I even resort to xylitol discs to moisten my mouth, but often it seems like nothing pushes back that flare until it is ready to retreat. Meanwhile, I throw iced water down like a marathon runner and hope it will end soon.

Does this happen to you? Let me know in the comments!

The BMS-Support website has several articles that deal with ongoing research into the salivary system in Burning Mouth Syndrome sufferers, and although I applaud that scientists and researchers are looking at it, a diagnostic method and treatment option can’t come fast enough.

We are burning up.

Burning Mouth Fantasies

canstockphoto67880648-Marisha

(c) Canstock photo/Marisha

A friend asked the other day how I was doing. Was the burning any better? Had they found any cures?

I assured her that all was the same. I am so grateful for the efficacy of Aimovig in controlling my migraines, but it has, as expected, done nothing for Burning Mouth Syndrome (BMS). The Clonazepam ODT I take twice a day keeps the burning at a level where I can function and only occasionally do I have a flare of a day (or three) where nothing seems to touch the pain level much and staying very hydrated, sleeping and being quiet are the only coping strategies that get me through the day(s).

After we spoke, however, I found myself in a fantasy where I typed the amazing title of a blog post. “Burning Mouth Syndrome Cure is Here!” I was delighted as I daydreamed about a day when we would all descend on our doctors in droves, eager to start the totally fictional therapy that would break us out of the bars of this chronic pain prison. I imagined how gleeful I would be to write that very last post in my “Burning Mouth Journey” as I sent people on to pursue their cure and closed this shop up once and for all.

I even fantasized about what would happen next. Would I keep the blog up so that even people who didn’t find the good news elsewhere would still have somewhere to look? Probably. I would update the BMS-Support Website with a banner and then plan a “coming out” party with all of my friends. Instead of the traditional “coming out,” however, it would be coming out of pain, coming out of the community of chronic pain sufferers, and celebrating for the millions of us who would finally have both an answer and a cure.

Alas, it was only a fantasy.

One to be placed with unicorns coming to frolic outside my highrise window and talking to birds. I would, of course, tell the grackles to get lost! 😀

So, back to reality and a day of working out, lunch with a friend, and spending a bit of time this afternoon scouring the Internet for any new research, findings, or hope to share with my partner in detective work, Dennis Sharpe. He is the guy who answers your questions on the BMS-Support Website, and if you have been helped at all by the site, give him thanks. And if you come across a study that is recruiting or scientific research that applies specifically to Burning Mouth Syndrome, let us know through the site. We may add your find to the information that is there for everyone!

Wishing you a low-pain day and a good week ahead, my friends.