Year Sixteen Approaches – Burning Mouth

May is Mother’s Day.

May is Cystic Fibrosis Awareness Month

And May will mark my fifteenth anniversary with Burning Mouth Syndrome this time around and the beginning of a sixteenth year.

I will celebrate the first with an ever-expanding family (Two more grandbabies this summer!) and commemorate the second by fundraising and supporting our little CF champion, Miles, but that third one is a bit more problematic.

Meanwhile, the stresses of life go on, as they always do, and as we juggle living in a small apartment while our condo undergoes flood remediation (A sprinkler pipe burst at the top of the tower in July!), two babies coming this summer and wanting to be there for both our new mom and dad and the existing family who is adding a second child, and knowing now that my 83-year-old mom is in her final year of life, stress has gotten to a new level. Care, hospice, and all the complications you can imagine are looming.

It’s a lot, but we will get through everything with as much grace and generosity as we can muster.

I am grateful for Effexor XR and Clonazepam ODT because without them my life would be a bit hellish. Effexor XR is still keeping my pain level to a tingle most of the day, and a small dose of Clonazepam ODT knocks out the pain as it escalates to its peak late in the day and helps me drift off to sleep where I experience no tingle and no pain. It is working for me and I will see my Neurologist next month to discuss any next steps we could or should take.

Is anything new with you guys on the burning mouth front? Let me know, and keep checking the BMS Support website. A dedicated volunteer is paying for that site and I just help him keep it up to date. If it has helped you at all, please let him know you appreciate it!

Best wishes to all of you, and to all of the Mothers, Grandmothers, Mothers-in-Law, and Mothers-in-Love out there, have a wonderful Mother’s Day.

Change, Stress, and Chronic Pain

We have all read about the linkages between stress and chronic pain of all kinds. Our bodies know when life is getting a bit “extra” and it reacts accordingly.

Many of you may have noticed that when big events or changes in your life and routine happen, your burning mouth pain may flare. If you are wise, you have anticipated this might happen, have your coping strategies at hand, and are up to date on any medication that may be helping you.

What are coping strategies for burning mouth syndrome or disorder?

The Burning Mouth Support website has a whole page devoted to them here.

More information and help that other sufferers have found useful are at Stuff That Works – Burning Mouth Syndrome. Have I found many things they discuss to be useful? Not personally, but if I have learned anything about this mystery disease after nearly fifteen years, it is that it is very individual, and different things work for different people. Sometimes just having people to talk with about it or feeling like you are part of a community can help.

Is there a cure? No.

Continue reading

Stress and Burning Mouth Syndrome

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? Continue reading

Burning Mouth Holidays

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The holidays are here and you are rushing around picking out gifts for those you love, preparing for travel or for travelers, and many of you may be under more stress than usual. As all of us who suffer from Burning Mouth Syndrome or other chronic pain conditions know, stress is not our friend.

What can you do to cope with the gulf that may exist between what you want to do and what you can do?

Press the pause button. Continue reading

Burning Mouth Syndrome & Your Weight

The Obesity Code by Jason FungAs I described in a previous post (Weighty Decisions-Life with BMS), Burning Mouth Syndrome has added weight to my body, mostly from stress, but also because eating feels good. The pain stops momentarily, and after a meal, for even up to thirty minutes or so. Unfortunately, that means that we are tempted to eat too often and too much. Continue reading

Weighty Decisions – Life with Burning Mouth Syndrome

img_4278Our younger daughter just got engaged.

It was a dream proposal (at the highest lookout of Kauai’s Waimea Canyon) and it will be a dream wedding next fall. They are wonderful young people who have loved each other for nearly seven years, and the next stage of their lives together is right around the corner!

I, like many of my fellow Burning Mouth Syndrome (BMS) sufferers, have put on weight from the stress of chronic pain and the transient relief of eating. I have resolved to change that trend, both for my health and to feel better about myself. Continue reading

Coping With Stress and BMS

09a9aa5c07898aca806cc27863f79d20As you know, I have been dealing with Burning Mouth Syndrome for far longer than I ever thought possible.

I know there are those of you who are entering or have passed your second decade with this chronic pain and my heart goes out to you.

All of us who have dealt with BMS know that stress just makes it worse. We have seen the pattern again and again, and yet, life goes on.

I am considering a run for a local, elected office.

No stress there, right?

The urge to make a difference and be of value has trumped my hesitation to put myself out there and add stress to my life…so how will I handle it? Continue reading