I started to write this as an update for Burning Mouth in the Time of COVID 19, but I realized it would be too long. Feel free to read that previous post since it lays out my thinking about checkups in a pandemic! Many doctors and specialists are moving to a mix of virtual and live appointments and for the most part, I think that may very well be the way of the future. However, if you have something they need to see, test, or feel to diagnose, don’t hesitate to press for an in-person appointment. They have protocols and PPE and are doing a great job of keeping everyone safe. Ask ahead what the procedures are, and you will either be reassured or decide to switch doctors!
That said, here is my update and what I experienced as I tried to catch up on my checkups.
The Annual Physical was protected and easy, and I was so glad I went in person (We have done a virtual follow up appointment.) because the little itchy, burning rash I had developed on my gluteus was not prickly heat. It was shingles! It was so mild because I had taken the Shingrex vaccine, but it gave me a hint of how extremely painful that could be.
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
Stress. We know it makes our chronic neuropathic pain worse. Our pain increases as stress rises, which increases pain, which increases stress…and well, you know the rest.
It’s an automated answering system from Hell, with no readily visible pound sign to hit to get a live person on the line. Or is it?
Stress is coming at us from all sides now, from the worries and complications of the pandemic to the feelings and actions we are experiencing about racial equality and equity. We are not alone in our stress by any means, but chronic pain sufferers can be triggered in more than one way by it.
I admit that I resisted counseling at the beginning of my Burning Mouth Syndrome journey. I had an instinctively negative reaction to the assumption that this pain was “all in my head,” or that therapy could or would help. It also felt suspiciously like I was getting shuffled off into the “menopausal female” box where any aches or pains or issues were part of the incredibly mysterious malady that seemed to be menopause. As a strong and independent female, I rejected this categorization and marginalization and started fighting back.
How? 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