Life has decided I needed an additional challenge and so sleep apnea is joining Burning Mouth Syndrome now that I have conquered my chronic migraines with Aimovig injections once a month.
Sleep apnea affects so many people (An estimated 22 million in the U.S.) with 80% of those undiagnosed and therefore, untreated. Sleep apnea affects many systems in the human body, as laid out in a 2017 article from Science Daily, researched by John Hopkins Medicine. The harmful byproducts of this stress on our bodies are documented, but I found myself wondering if there might be any link with chronic neuropathic pain conditions like Burning Mouth. I can keep wondering since there are few studies and as usual with BMS, they are quite small.
However, here is what I found: Continue reading
Another year begins and this summer it will end my twelfth year and start my thirteenth with our little friend, Burning Mouth Syndrome (BMS). That is a long time, but there are others out there who have suffered longer. Sometimes, much longer.
As we round the corner into 2020, what have we learned?
BMS is still a mystery. There are evidently no celebrities in the world who suffer from it (or at least they aren’t publicizing it). Diagnosis is still one of exclusion and takes dedication, discomfort, time, and resources to achieve. Most importantly, there is no cure in sight. Continue reading
My husband and I like to travel, and we have always dreamed of going to New Zealand. The timing is right (We have the resources but aren’t too old or infirm to enjoy the activities!) and so we have planned an adventure-filled excursion. We will deal with a 15-hour flight there and back, crossing the International Dateline, and a time zone change beyond what I have ever experienced.
The question arises…How do you stay on top of Burning Mouth Syndrome under these circumstances?
Plan, my friends, and plan well. Continue reading
Photo by Shopify Partners from Burst
You can find yourself with a new doctor for a variety of reasons. New insurance, moving to a new town, a referral to a pain specialist or Neurologist…these are just a few. In all of these cases, you will need to bring your new doctor up to speed about a chronic neuropathic pain syndrome they may never have heard about.
A Neurologist or pain specialist may have dealt with BMS before and if you have a choice in the matter, try to find one who has. Their experiences may be to your benefit.
However, many of us are caught in that somewhat awkward position of educating our medical professional and it can be daunting if you aren’t prepared. Continue reading
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
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.
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. Continue reading
I have suffered from Burning Mouth Syndrome (BMS) since 2008. Yes, I am in my 12th year of chronic pain and there is no end in sight.
If you have read any of this blog, you have an idea of the incredible amount of testing, medicines, and specialists I have run through and you know that I left no stone unturned in searching for a cause, a treatment, a cure, or what I settled for eventually…a diagnosis.
You may be a sufferer, whether Primary BMS (no underlying illness), Secondary BMS (burning due to other illness or treatments), a myriad of other chronic neuropathy illnesses, or you may care for someone who is suffering.
Have you noticed that they often do not talk about it? When you ask how they are, the answer you often get is, “Fine.” This is not untypical. There is something about the sheer persistence of a chronic pain syndrome that makes many of us go underground.
Let’s talk about that.
When we go underground with our pain, we do some potentially destructive things.
- We deny our knowledge to the community around us. Whether it is facts about our illness, coping strategies that may help someone else, or helping to define the aspects of our illness that may intrigue researchers, attract funding, and perhaps lead to diagnostic tools, treatment, or a cure; it is all valuable.
- We withdraw from the people who care for us, and without proactive communication, we can irreparably damage relationships that could be of vital support.
- We discount our importance in the world. Never thought about it that way? You aren’t alone. We feel that we are putting a burden on others when we talk about our pain or we think we are whining when we acknowledge to others that,”No, it hasn’t gone away. I have just gotten better at pasting a smile on my face.” How would you feel if someone you loved hid that very important knowledge or those feelings from you?
Something to chew on, don’t you think?
I have gradually synced my neurologist appointments with my eleven anniversaries of BMS membership.
Each Mother’s Day ticks off another year with Burning Mouth Syndrome and I once again experience the joy of celebrating those lovely young women who are my daughters with the sadness that comes with another year of no cure in sight.
I saw my neurologist this week, and there was really nothing new to try so I will continue with my Klonopin/Clonazepam ODT and will keep dealing with the drowsiness side effect it brings.
But no pity party for me this year. Instead, I am focusing on the pain in my life that has been relieved successfully (Migraines practically cured by Aimovig), and some recent studies that indicate that a few researchers around the world are looking at our mysterious syndrome and finding some clues. The Burning Mouth Syndrome Support website just posted a link to a recent article from Scientific Reports titled “Proteomic profiling of whole-saliva reveals a correlation between Burning Mouth Syndrome and the neurotrophin signaling pathway.”
That’s a mouthful, isn’t it? You can read the entire report, along with many other articles, study reports, and abstracts at BMS-Research.
The scientific report article is dense, full of med-talk, science-talk, and many other things that sail over the heads of non-professionals but here is the main idea. Guy Krief, Yaron Haviv, Omer Deutsch, Naama Keshet, Galit Almoznino, Batia Zacks, Aaron Palmon, & Doron J.Aframian wanted to do profiling and bioinformatic analyses of whole-saliva (WS) from BMS patients compared to WS from healthy individuals. Continue reading