Am I Getting Better? – Burning Mouth Syndrome

In May, I began a “job” again for the first time in about thirty years. I have been working as a volunteer all this time, but it was at my convenience and although there were busy times, it was not a constant or consistent routine.

Now I care for my five month old grandson who was diagnosed with Cystic Fibrosis at three weeks old. I drive to my daughter’s home by 7 AM each weekday morning and leave at 3:30 PM to beat the traffic home. (She and her husband work full time, right now at home but increasingly in their offices.) I feed him, change him, bathe him, play with him, and interact except when he naps. While he naps I help around the house with laundry, dishes, and preparing bottles. Now we are beginning solid food and that will be another adventure!

What does this have to do with my Burning Mouth Syndrome pain?

Since beginning this immersive work, I have seen my burning mouth pain lessen over time. I now take the very lowest dose of Klonipin ODT only once a day and have often gone an entire day without noticing the burning.

Is it gone?

Not completely. There are still days when I will notice it escalating and I make sure to drink a few extra glasses of very cold water. I have my Klonipin in my purse, but have not had to dip into it yet.The pain and dryness are still with me, but seem to be lessening despite my nearly constant use of my voice through the day! I notice it most at the tip of my tongue now instead of in the entire oral cavity. I will take that!

I have concluded the following in a totally and admittedly anecdotal way.

Keeping busy, and I mean really busy, doing something constructive for people I love passionately distracts and redirects my attention in a positive way that helps me.

Would this strategy help others to cope with and perhaps lessen their pain? I have no idea, but the whole idea of this blog is to share coping strategies, treatments, and any news I hear about Burning Mouth Syndrome with other sufferers who happen to read it.

Perhaps it is worth dipping your toe into something that absorbs you. Hobbies, jobs, volunteering, …you choose! You can always stop if it isn’t helping, but in the thirteen-plus years I have been dealing with Burning Mouth Syndrome, this is the best it has been. I don’t know if it will last so I will savor it and the satisfaction of doing something worthwhile, valuable to my family, and incredibly engrossing.

Some things last even longer than chronic pain.

2 thoughts on “Am I Getting Better? – Burning Mouth Syndrome

  1. What a gorgeous photo of you and darling Miles.
    Your new ” job” is bringing you much joy !
    I agree that an ” outer- focus” calms the discomfort…possibly because of the endorphins released ? A dose of oxytocin, the happiness hormone, certainly can’t harm.Thank you for sharing your heart-felt experience. experience.Blessings and best wishes.Marena

    Like

    • Thank you, Marena!
      I hadn’t thought about oxytocin or dopamine, but they may be part of it. He certainly brings on happiness! Take care, and I hope you are doing well.
      Kalí

      Like

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