I read that somewhere recently and thought, “Wow, I never really thought about it that way.”
I knew that anger is often linked to fear, but didn’t intuitively link it to grief. Most of us know that anger is a stage of grieving before you reach acceptance, but what if you or a friend or family member simply gets stuck there. Is there an appropriate time limit to mourning?
The answer is no.
Those of us who deal with the chronic pain of Burning Mouth Syndrome may go through successive cycles of grief. We grieve that we hurt and don’t know why. Then we grieve the myriad ways our lives have been changed or our activities hampered by pain. Then we grieve that we cannot talk about our pain because it has gone on so long that we feel we are burdening others when we speak of it. That’s a lot of grief, my friends, and I know you have experienced many different and sometimes difficult reactions from your family and friends over the years.
I recently saw a lovely video about helping your grieving loved ones and knew I had to share it with you.Continue reading →
There is a new migraine prevention medicine out there that is causing a lot of excitement in the chronic migraine sufferers of the world. Aimovig/Erenumab is the first and only FDA-approved Calcitonin Gene-Related Peptide (CGRP) receptor blocker and my friends who have been battling debilitating migraine pain for years are eager to try it.
You can learn more about this at Aimovig. It is available by prescription only and right now reports are coming in that the manufacturer has been overwhelmed by the demand and there may be a wait to get this self-injectable monthly migraine preventative.
Will it work for everyone? The magic 8 ball says, “Probably not.”
That is the case for any medication, my friends. It will help some more than others, and often for reasons we don’t know or understand. But it is definitely worth having a conversation with your doctor if you suffer from chronic or episodic migraines and you have tried all of the usual suspects without lasting relief. The manufacturer is careful to say that it will lessen the number of migraines you have, not eliminate them completely.
I have been battling oak pollen allergies since the beginning of April. We got a good rain for a day, and a small respite, but the levels are back up in the medium category today and I feel it.
Burning Mouth Syndrome is a foe I have been battling for ten years now (Mother’s Day will mark the 10th anniversary…Yay?) and I have noticed a pattern that arises when I am forced to take decongestants along with my antihistamine because nasal congestion is rocking my world. There is no doubt in my mind that the drying action of the decongestants, although needed and effective for the life-sustaining action of breathing, also irritates the burning neuralgia of BMS. In spite of adding quarts of water to my intake, the pain has been nearly unbearable some days. When added to a string of migraines, triggered by sinus pressure, it has been a tough time.
I found myself looking forward to that next dose of Klonopin/Clonazepam so I could doze, even if I didn’t really have time to do that. To sit in my chair, watching TV with my husband, and just drifting off to sleep where the pain was not present was a gift on those high burning days. But what do you do when you have things to do, people to see, and responsibilities that are not subject to rescheduling? What do you do when there is a once in a lifetime event going on, and you can’t afford to miss it?
As many of us do, I haunt the online forums looking for new information or even unusual coping strategies for Burning Mouth Syndrome. Interested in learning more about this mysterious chronic oral pain? Check out the BMS Support Website.
As I read the entries, questions, and answers, I realize that many people who are looking for Burning Mouth Syndrome support are not reporting its symptoms. Often, they are reporting much more worrisome symptoms like sores and lesions, extremely dry and cracked tongues, and other varied complaints regarding other parts of their bodies. I find myself thinking over and over, “That is not primary BMS. They need a second opinion and to investigate other underlying disorders.”
You see, primary BMS is invisible. I am not kidding! If a doctor (and believe me, I have had quite a few) looks into my mouth and throat even when I am burning most intensely, they will see nothing unusual. That is a hallmark of this syndrome and if you have visible symptoms, please seek a different diagnosis. It may be another condition that has a cure or medicines that can better treat your symptoms.
Wouldn’t that be great?
The other issue that has been floating around for ages but has gained traction as states have legalized marijuana for medical reasons or in general, is the question, “Could cannabis or CBD oil help with Burning Mouth?”Continue reading →
I realized I haven’t posted since the holidays, and I could easily blame that on everything that has gone on…the wedding in November of our younger daughter went beautifully and just this month they surprised us with the house they are purchasing, our older daughter’s wedding approaches (so quickly!) in May and they have begun to build a house not too far away from us, and of course the day-to-day work of a being a busy philanthropist and volunteer!
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?
Many of us go through what I think of as the “thrashing stage” when we first start experiencing the pain of Burning Mouth Syndrome (BMS). It is a time of anger, sorrow, guilt, and confusion as we try to determine what is going on, why it happened, and what we can do about it. You may have thought, “If only I hadn’t done this, or if only that hadn’t happened…I would not be in pain.” It isn’t logical, but often, neither are we at this stage of our journey. Continue reading →
Yesterday as I grabbed my morning coffee at the neighborhood shop, I spotted an acquaintance. I had seen her around the gym where she is always intense and focused but had only spoken with her once or twice over the years. I said hello and reminded her who I was (You know when you get that feeling that they know they know you but might not remember your name or the context?) and we stood together waiting for our orders.
“My God,” she said, looking at me intently, “You always look so glowing. Why is that?” Continue reading →
As 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 →