One of the three Neurologists who treated me over the years had experience with quite a few cases of Burning Mouth System (BMS) and put mine in his “top five” of well documented and intractable cases. This is not an award I was excited to receive!
He said that like many chronic pain syndromes, “You know it is not fatal and that other people live for decades with it, but what wears you down is the incredible persistence.”
I thought he captured something very relevant. The day after day after day of chronic pain that has its own repeating pattern of escalation and only completely relents when you sleep. It is a wonder that we aren’t all sleep-aid junkies. I have noticed during the pandemic when I have so few things that get me out of the house early in the morning, I am sleeping 8-9 hours a night. It is lovely.
Someone asked me recently if I thought BMS would make COVID-19 worse if I got it. Continue reading
If you are here, I assume you know what Burning Mouth Syndrome is, that no one knows exactly what causes it and that there is no cure. If you don’t, this blog is full of descriptions and you can also check out the BMS Support Website.
If you are here, you are probably a BMS sufferer or knows someone who is. This blog is not usually a casual stopping place out there on the Internet.
I’m going to assume that you know about Covid 19 and the global pandemic it has set off and the fact that people with pre-existing conditions are more at risk for severe cases of the illness and even for death.
Is Burning Mouth Syndrome a pre-existing condition that could put you more at risk? The short answer is that if it is primary (in other words, there is not an underlying illness that is causing it), probably not. However, we do end up in doctor’s offices more often and in a world that is avoiding as much contact as possible with other people, and particularly contact with sick people; that is causing a stressful situation for us.
Have you skipped a trip to your Neurologist or Pain Specialist yet? Continue reading
Over the last couple of years, I have become short of breath when walking up steep hills, and have even run out of breath when singing a long phrase or at the end of a sentence. I figured I was just getting older, heavier, slower, but when my sleep apnea was diagnosed the doctor found something else.
My lung capacity had gone down to the point where the drop could be measured.
The next stop on this particular journey is to see a Pulmonologist and so I did. He measured my lung capacity and recommended a chest X-ray which came back with some suspicious shadows at the bottom of both lobes of my lungs.
Off to the radiologist again, but this time for a high-resolution CT. Yes, my friends, these are expensive and since we were still on our deductible for the year it was a large hit to the wallet but worth it since it gave us insight into what had previously been a shadow. Continue reading
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.