Burning Mouth and the Humorous Pain Chart

A friend shared this image today on her Facebook page.

It caught my eye because as chronic pain sufferers, we get asked about our pain level all of the time by a variety of specialists. Burning Mouth Syndrome is a novelty to some doctors we encounter, and a pain chart helps to accurately convey the level of pain you experience and how it affects or inhibits your daily activities. Often it is a range, and with BMS, this is particularly true because our pain escalates throughout the day unless we find coping strategies or medicine that provides some intervention.

This “improved” version adds a bit of humor to the pain scale (bees, bears and ninjas?), but also makes the point that if you are truly at the top-level of pain (10 is the top!) then you are incapacitated or have been rendered unconscious by the level of pain and medical intervention is required immediately.

I was surprised by the comments that accompanied the image. Some laughed, but others were angry, feeling that the image was mocking their pain. Some even took the scale to task for not having enough numbers, because their pain was “at least an 11 or 12!” Others berated the creator for not including labor, even though that is a pain that only affects one gender.

Pain is affected by many factors, and each person’s tolerance and perception is individual but we must be consistent and coherent when talking about our pain levels with medical professionals. Some of the comments came from people in the medical profession and they gently mocked people who claimed they were experiencing a 10 level of pain but were “casually talking on their phone and eating chips.”

Don’t be that person. Know the pain chart and be realistic about your level of pain. It makes you a more credible patient and helps the medical professional take what you say about your pain seriously.

I do not mean to tell you to under-report. That will do you no favors either, but get familiar with this range of pain and tell your doctor as clearly as you can what you experience.

Again, particularly with diffuse neuralgia like BMS, it will be a range of pain that generally increases throughout the day. Here is my personal pain scale as an example, based on the image below.

I wake and eat breakfast and within an hour or so, I will begin to burn at a 2-3 level. I take my .50 mg of Klonopin/Clonazepam ODT and make sure I am adequately hydrated. The pain lessens to between 1-2 (mostly tingling) and I use coping strategies until lunch when I again get about an hour holiday from pain by eating and drinking. Within an hour or so of eating, the pain begins to escalate and so I take my second .50 mg tablet with lunch and again, make sure I am very hydrated. (Dryness is not a friend to BMS sufferers.) Depending on my day, the pain will escalate to about a 4-5 if I am not able to grab a small nap or can get all the way up to a 6 if I am not diligent in using my coping strategies. If it does, I will take the optional third .50 mg tablet to get me through until bedtime. If I am diligent in my coping strategies (drinking, sparingly using xylitol chewing gum or lozenges), I will usually stay at a manageable 3-4 on the burning and can function well until bedtime when sleep relieves all pain.

In the afternoon, if I can grab a 15-20 minute nap, a miracle happens. The pain clock resets for me and I go back down to my 1-2 morning level and gradually escalate again. This is particularly helpful when I have an evening event scheduled and need to be at my best.

Notice that at no time do I allow my pain to increase into the 7 or above range. I intercept that escalation with hydration, medicine, coping strategies, and sleep if it is at all possible.

Will this strategy work for you? Maybe.

Everyone is different, but I share this in the hope that perhaps my strategy will help some of you out there to cope and deal with this mysterious ailment.

Good luck, and let me know how you are doing!

 

2 thoughts on “Burning Mouth and the Humorous Pain Chart

  1. Thank you. Very helpful. I have been prescribed Clonazepam having to get evidence from a consultant in London in writing that it may help to my gp.
    I am prescribed .25mg td. I take randomly when pain at about 5-6. Swill and swallow although advised to spit out. One of my other main symptoms arevsevere headaches most mornings on waking up and burning eyes. Recently I started Beconase as thought eyes/blocked nose cud be hay fever- this has helped a bit but my headaches are so debilitating I tend to take solpadeine x 2 which I hate doing as codeine very addictive and in itself can cause problems but if I didn’t pain scale and burning mouth can go to 8-9. The pattern you describe is same for me and lying down for a while in peace is good and distracting self helps. It is awful to live day after day with this I have to say. I also now have an empathic therapist as speaking to someone about how debilitating this condition is seems really important even thou they cannot change the pain level, it helps psychologically as many others who do not have this condition do not get it and cannot understand how awful it is to work-I work in the Mental Health field as a Senior community mental health nurse so I support others slot and when pain very bad it is hard to be present and available. I did give my job up for a year but then I felt very low, no role and so missed the team, patients and a real purpose to be helpful to others.
    Anyway, thank you again. Good to hear how you cope and I do wish you better days ahead.
    Carol 💓

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    • Hello, Carol!
      The system in the UK is so different from the US, in many ways better, in some ways a bit frustrating. Your consultant’s prescription and instructions regarding Clonazepam are very limited compared to what the neurologists in the US are finding therapeutic. I use orally dissolving tablets of it that allow me to melt it on my tongue, then swish through the oral cavity and then swallow for the maximum helpfulness. I don’t know if you can even get the ODT formulation there, but if you can, I do find it more helpful.
      Your headaches are concerning, and I am glad you investigated the allergy side of the house, but if they are debilitating, make you sensitive to sound or light, or produce more pain on one side, they could be migraines and you and your doctor should discuss relief for them. There are other headaches that can be debilitating and dangerous to irritating and not dangerous (cluster, ocular, etc.) and to know what kind you have will allow for a targeted therapy.
      As you may have read in this blog, I suffered with migraines for decades and was getting up to 18 per month when Aimovig/Erenumab came out and knocked them back to one or less per month. It was like getting part of my life back. It did nothing for BMS, but at least I didn’t feel like I was getting piled on by pain more than half of the month!
      Keep in touch and let us know if that tiny dose of Clonazepam is helping and be sure to check out the BMS Support Website where many research studies are listed. If there is something there that you think might help with conversations with your doctor, print it out or give him or her the link.
      I wish you the very best and hope that you and your family stay safe and avoid COVID, as well.
      Kali

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