Chronic Pain: Living What I Did Not Know

On March 13, 2013, a needle stab or two during oral surgery triggered chronic neuropathic pain, which involves my entire mouth and, on its worst days, my lips, nose, and palate. It is called burning mouth syndrome, a misery I would wish on no one.

I’ve spent the years since then trying to cope with life as a person with chronic pain, trying every medication and complementary treatment my doctor and specialists recommended. As Dr. Victor Montori told me–before I myself became a patient–patients have to complete many tasks, and work to regain health. Doctors must consider what else patients have to achieve while conducting the work of being ill.

Nothing ever really helps–or what sometimes helps causes short-term memory loss–and I’ve been forced to adapt to living with a condition that has upended my life. I’ve also developed several autoimmune diseases, which come and go and flare and vanish, a perplexing mix of symptoms and treatments.

Much irony in this, learning to live with multiple chronic conditions as I age. It’s a topic I’ve written about for many years, especially when writing about how to help frail elders and their caregivers. The issues sometimes seemed intractable, and the solutions often appeared to be simple.

I have since learned how tough all of it can be. In December, I agreed to participate in a new patient-centered medical home (PCMH) project. I signed on with relief, for I could no longer manage the dozen or so medications prescribed by seven different providers–none of whom interacted with the others! Even now, when a clinical pharmacist finally completed her review of my medications, with an eye for spotting any that might be discontinued, I have yet to see her recommendations.

It is not that I have not asked–but that her recommendations were apparently faxed to my primary care provider, who then faxed them to my care coordinator, who concluded that I should not see them until my next appointment with the PCP. Meanwhile, agitated specialists have called me to warn that someone has been calling them to suggest changes to my medications!

Whew! Health information technology (HIT)? Not there–the area’s clinicians have chosen HIT vendors whose programs suit the practice’s needs. This means that they might not connect with the records stored by other clinicians, or the hospital, or the diagnostic tests. I am still responsible for trying to convey the complexity of it all to each clinician, and hope that the independent pharmacist who fills some prescriptions (other than those required by my medical insurance to be called in for maintenance supplies) spots potential adverse effects or interactions.

When I voiced these concerns to my care manager, she noted, “Well, you are a highly educated person who is knowledgeable about what should happen. This [program] is still a work in progress, and it will require many tweaks.”

Tweaks? I’m tweaked! What about those whose health literacy is less sophisticated? I’ve found my own sophistication to be no match for the alternatives clinicians suggest to me. Often, I guess–do I like the sound of the medication? Have I seen it on direct-to-consumer ads? Have I tried it before? What do others think of it?

It seems a foolish and expensive way to make such critical healthcare decisions, yet off I go on this road less travelled. Please take some time to follow me for a while, as I chronicle the next few months–and the work I accomplish.

 

Key Words: chronic pain, pain, autoimmune disorders, care coordination, patient-centered, health literacy

About Janice

After years of writing--poetry, essays, articles, reports--I turned to drawing as a way to cope with grief over the death of my grandmother. This turn to drawing has become a complete opening to it, and has led to publication of my first picture book, "What Are Mothers For?" A joyful reflection on the long and loving relationships between women of all ages and stages of life.
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4 Responses to Chronic Pain: Living What I Did Not Know

  1. Gerrit says:

    Hey Janice,

    I always found it so weird how few people write online about burning mouth syndrome, considering it is not that uncommon!

    Something that not many people know about is that burning mouth syndrome can be worsened if a reflux comes on top. As reflux is a quite common disease this happens quite often!

    I have published an article about that on my blog: https://www.refluxgate.com/burning-mouth-syndrome

    For people who have BMS and reflux it can be a good idea to try getting on a anti-reflux diet. To see whether there are any improvements!

    • Janice says:

      Hi:

      Thanks for taking time to write this message. I was surprised when an ENT diagnosed me with silent reflux. But treatment for it has not helped the burning mouth. I will look into the diet and see if that helps at all. Thanks for the suggestions.

      Janice

  2. Fred Puckett says:

    Good Evening Mrs. Schuster,

    I happened upon your story posted in the WP July 2014, “Just a Snip” and wondered if you had found a source or an effective remedy. Reading your February 2017 post, it appears at least a name for the malady has been settled upon.

    One piece of advice, continue to search for a treatment to address the root of the problem. Too often, patient and clinician settle for treating the fruit of the problem. In the second paragraph of WP article, symptoms were present prior to the procedure. It was kiiinda, maaaybe reasonable (as the saying goes, when you’re a hammer everything’s a nail) for the dentist and oral surgeon to think cold, sharp steel was the solution.

    Keep at it

    • Janice says:

      Hello:

      You are correct–some symptoms were present, but nothing like the ones that have since developed, including others related to burning mouth, nerve damage, and post-menopause. These are far worse and now, because of the “war on opioids,” are going largely untreated. I have tried just about every treatment one can think of, to no avail. Sleeping well and exercising whenever possible help. Laughter is the biggest help. Stress is a terrible trigger. And learning to live with chronic pain has been the hardest lesson. I keep trying, and hoping that someday, a magic potion eases this pain for the 5 million Americans who live with this condition. Thank you for taking time to read the article and write.

      Janice

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