Stress. We know it makes our chronic neuropathic pain worse. Our pain increases as stress rises, which increases pain, which increases stress…and well, you know the rest.
It’s an automated answering system from Hell, with no readily visible pound sign to hit to get a live person on the line. Or is it?
Stress is coming at us from all sides now, from the worries and complications of the pandemic to the feelings and actions we are experiencing about racial equality and equity. We are not alone in our stress by any means, but chronic pain sufferers can be triggered in more than one way by it.
I admit that I resisted counseling at the beginning of my Burning Mouth Syndrome journey. I had an instinctively negative reaction to the assumption that this pain was “all in my head,” or that therapy could or would help. It also felt suspiciously like I was getting shuffled off into the “menopausal female” box where any aches or pains or issues were part of the incredibly mysterious malady that seemed to be menopause. As a strong and independent female, I rejected this categorization and marginalization and started fighting back.
How?
With education. I read everything I could get my hands on about Burning Mouth Syndrome and eventually became an advocate for its sufferers through a television interview and working with the BMS Support Website.
With communication. I collaborated with my doctor to get more information (Some of those abstract and study sites are just not available to the public!) and we made a great team that taught me how to communicate and to help my health providers understand and assist me. I started this blog in order to express myself and also to give folks out there another place to look for the details of this journey. It’s not a sprint, my friends, it’s a marathon through a suburban neighborhood where you may get an open path to some information but many times it turns into a cul de sac or traffic circle as studies are not completed or the information from them is not relevant to our plight.
Opening up a line of communication opened me up, as well, and I found a Counselor to help me process how I was feeling and the coping strategies I was employing. Do you get the distinction there?
NOT someone to psychoanalyze me regarding what horrible incident in my childhood or my feelings about my mother or father, or even the changes that come in menopause might have caused this pain. INSTEAD, an empathetic listener (not a family member or friend) who is trained to help you cope with things that you cannot change. It’s a whole different paradigm and I highly recommend it if you are able to do it. Stress can be released through verbalization and perhaps even a good cry. The less stress, the less pain, and that is a great thing.
Support groups for chronic pain may be helpful as well, and many are free for the asking. Check around your area and see if there is one you can attend. One or two sessions will tell you if it is a good thing for you to do and you may even make new friends who really get the way that chronic pain affects our lives, bodies, and even our personalities.
Yoga, Acupuncture, Massage, Exercise of all kinds, Giving back to others by volunteering, and other coping strategies are wonderful but many have become so challenging in the current pandemic.
What are you doing in lockdown? Have you got some great ideas for dealing with the stress of Burning Mouth Syndrome?
Feel free to share them here and we appreciate it!
A Burning Journey 
Do you find that drinking water makes it worse?
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Rita,
No, like many BMS sufferers, I find cold or cool drinks to be refreshing and a very brief holiday from my burning. Eating has the same effect but lasts a bit longer. The relief from burning does not last, but over time I have correlated worse pain and dryness when I have not been conscientiously hydrating. The syndrome already gives us a drier mouth than usual so being dehydrated is like tossing coal on the fire. Does water make yours worse? Do other cold drinks affect you the same way? Keeping a record of this will help your doctor or neurologist identify if something else may be in play.
Kalí
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Can you get a sore throat with BMS? I have Lichen Planus and wonder if I have BMS too (as well as Geographic Tongue). Its very confusing as BMS and Geographic Tongue can be similar to Lichen Planus.
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Sharon,
Burning Mouth Syndrome can cause some throat pain. I had some burning in my throat at the very beginning, but it was totally eclipsed by the burning tongue and oral cavity as the syndrome progressed. Lichen Planus can be treated with corticosteroids and a host of other treatments. I hope you are pursuing these. Antihistamines are the go-to treatment for Geographic Tongue. Neither of these disorders is caused by Burning Mouth Syndrome, although you may experience some burning pain from either disorder. Please read the definition of Primary and Secondary Burning Mouth Syndrome at http://www.bms-support.org for more details, but it sounds like Primary BMS is not a fit for your symptoms. Secondary BMS may be present, but it sounds like you have a lot going on that would make it difficult for a doctor to diagnose it. I hope treatment of the LP and GT will address your pain and BMS will not be part of the package.
Good Luck!
Kali
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