Preparing for the Worst – Burning Mouth Syndrome and Covid

Masked WomanOne 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.

Intriguing. I hadn’t considered that, but I asked and the answer was that BMS was not considered a co-morbidity and should not affect anything other than comfort. The doctor I spoke with paused, and then said, “However, you should be careful to let the medical professionals know if you are taking any medications that should not be stopped abruptly.”

The meds we often take for BMS definitely fall into that category. So, in a situation where you may not be admitting yourself to the hospital for treatment and you certainly won’t have a family member or anyone else there to advocate for you, what should you do?

Prepare.

I have a labeled and organized folder that has copies of my Directives to Physicians, my  Power of Attorney to my husband, and supplemental directives that state if I am dying, not to take extraordinary measures, but keep me pain-free and let me go. These forms are secured in the folder because I don’t want any to fall out and be lost in a chaotic time.

Now I am adding a list of my current medications with the “Don’t Stop Abruptly” meds in bright red block letters. I will also add a list of my doctors with their contact information and a copy of my insurance card so I will not have to try to look any of that up if I am ill enough to go to the Emergency Room. If I am allowed to bring my meds with me, I will, because they cost an arm and a leg at hospital prices.

Who would have thought that we would have to plan this way?

But that is what a pandemic does. It tosses all of the dice and nothing is the same. Stay safe, stay home if you can, and please mask up for all of us when you do go out.

Thanks.

 

2 thoughts on “Preparing for the Worst – Burning Mouth Syndrome and Covid

  1. I have developed BMS during my battle with Covid 19 in March. I am just connecting the dots that I have continued to have reoccurring battles with it since. Has anyone else had this issue?

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    • Wendy,
      Wow, you have been through it. BMS on top of Covid 19. I have been reading about “long haulers,” which is what media has started calling the people who have lingering symptoms long after they are testing negative for Covid. Many of them seemed to be neurological in nature, and it did cross my mind that BMS might be initiated or worsened by it, but no one until you has even mentioned it. I have a feeling many others have just not connected the dots as well as you have. The upside? There is at least a diagnosis and a body of research work on Burning Mouth Syndrome, so you may find a Neurologist that will be able to help you. No one knows exactly what causes BMS other than it seems to be small nerve damage in the oral cavity and measurable changes in BMS sufferers tongues and brains have been documented. The downside? If this is BMS, there is no cure that we know of although many seem to go into remission after months or years of burning. Short story – get relief for symptoms and check out the BMS Support website for coping strategies that may be very helpful for this side effect of your Covid experience. Contact me at kalirourke86@gmail.com if you would like to discuss this further. Your experience may help others, but not if they don’t know about it. Thank you for reaching out Wendy, and I hope this has been of some small assistance. Kali

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