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!