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

6 thoughts on “Chronic Pain: Living What I Did Not Know

  1. 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!

    • 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. 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

    • 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

  3. Hi,

    I have almost the same “mouth” symptoms you do, at least as far as my tongue is concerned. I had TMJ and had a total joint replacement and reconstructive surgery at Mayo Clinic. I have had some nerve damage? previously all over my tongue, but seems to have gotten better. Then, after the last frenectomy(I had 2 previous laser surgeries where the scar tissue grew back within a week!), my Mayo surgeon did a differnt type, with a scalpel. My left side feels perfect, which is amazing bc I have always felt tight and pain there. Maybe that;s what resolved my symptoms on that side. When he stitched the last stich of the right side I felt like iIhad just been stabbed with a butcher knife. WOW! I have three kids, and I’d go through labor again rather than ever experience this pain again. It started hurting before we left he office, but I thought novicane wearing off. Went down to pharm. to get meds, and during the 45 minute wait I was bleeding (not profusely), screaming in pain. I thought I should go back up to the surgeon, but my ex-husband who took me there said it would be fine and I stupidly, like a million times before, believed him. Anyway, the tip of my right side tongue has been tingly off and on and really hurts. I have odd sensations, only on the right side now, and pulling pain on the floor of my mouth where the frenulum was. Thjis began immediately after surgery and has not stopped, but my doc doesn’t think there’s a correlation. I think a little CYA. I gues I need a second opinion, but how do you do better than Mayo.My doctor doesn’t have any idea what it is. I swore I heard him say before that he hit a nerve, but now denies he said that. I think your surgeons idea of “stitching” a nerve or similar sounds what it felt like.
    Dr. Fillmore is a great person, great surgeon. I love him and I understand stuff happens. Just tell me. I also had TMJ and resulting severe muscle pain and spasms. and dealt with it off and on.which until the end of September this year included jaw pain and constant muscle spasms. I used to wrap KT Tape around my face so it would hold it in place and not spasm AS MUCH. – never felt my jaw pain after surgery b/c my mouth pain was so great that’s all I could concentrate on. I showed your article to Dr. Fillmore, my oral surgeon at Mayo, and he told me he was very surprised that you had almost parallel symptoms to mine, which he’s never seen this type of pain before. He said he is going to look into it further, so maybe someday he or one of his residents will discover something. Same problems with drugs as you also, but I can’t work. Due to the pain, both jaw and now tongue, the titrating up and down on drugs that made me stark raving mad and I had no mind left (I am, or was, a lawyer) and the 5+ years of living with this, I have developed gut wrenching depression and some anxiety. I have a familiy history of anxiety and depression, which I’ve dealt with since I was 15 (I’m 56 now), but I have never felt this awful, destraught, hopeless…the list goes on. I feel like I lost the last good years of my life. I go through everyday trying not to kill myself, which I so want to do, but I’m still fighting, at least a little while longer. I don’t know how you do it. I couldn’t. I love writing (this is not a good sample) and have taken some writng classes. I blog and write a few articles and am terrified for some reason to start my novel. I get SSDI, $1,100 per month. Still living with ex-husband who is very critical and pull yourself up by your boot straps kind of guy It’s making this worse, I’m sure. I need to get out of here, but can’t with no money so I’m trappyed and want to die even more. 6 year old grandson has kept me going, but all I read (on NIH, NCBI, Medscape, etc) has only made me realize that nobdy really knows anything about nerves and I am SOL.

    • Hello:
      I am so sorry to hear that you are a fellow sufferer. It is a miserable illness, made worse sometimes just by the knowledge that it has no cure, and no real treatment other than trial and error. I’m sorry to hear that your doctor was an asshat, too. In my long journey, at least I’ve had the grace of being treated by kind and compassionate doctors who are willing to admit that they are not familiar with my ailment, but that they are willing to learn. I hope that you will consider joining a Facebook group that has literally saved my life at times. It’s a private group called Hang On Pain Ends (HOPE) for Burning Mouth. And you will find support, love, ideas and information to help you. On good days, you’ll find that YOU have knowledge and compassion to share, and that sharing will give you strength, too. {{{{{Laura}}}}}

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