Inhalers and Burning Mouth Syndrome

Over the last couple of years, I have become short of breath when walking up steep hills, and have even run out of breath when singing a long phrase or at the end of a sentence. I figured I was just getting older, heavier, slower, but when my sleep apnea was diagnosed the doctor found something else.

My lung capacity had gone down to the point where the drop could be measured.

The next stop on this particular journey is to see a Pulmonologist and so I did. He measured my lung capacity and recommended a chest X-ray which came back with some suspicious shadows at the bottom of both lobes of my lungs.

Off to the radiologist again, but this time for a high-resolution CT. Yes, my friends, these are expensive and since we were still on our deductible for the year it was a large hit to the wallet but worth it since it gave us insight into what had previously been a shadow.

Throughout my life, I have had bouts of bronchitis, sinusitis, and infections of the respiratory system. No asthma or anything like that, but I remember decades when I could expect at least two bouts of bronchitis a year if not more. Then, in 1994, I tipped over the precipice into double pneumonia and was ill for months.

The high-resolution CT revealed that all of that trauma over the years had left scar tissue, non-CF bronchiectasis (caused by past lung infections), and mild scarring left by atelectasis. These showed up as white webby designs in the first and small black holes in the latter when we reviewed the scan together.

I was shocked as you might imagine. This is where Burning Mouth Syndrome comes in, and I will be interested to hear if any of you out there have experienced the same. Continue reading

Sleep Apnea and Burning Mouth Syndrome

Life has decided I needed an additional challenge and so sleep apnea is joining Burning Mouth Syndrome now that I have conquered my chronic migraines with Aimovig injections once a month.

Sleep apnea affects so many people (An estimated 22 million in the U.S.) with 80% of those undiagnosed and therefore, untreated. Sleep apnea affects many systems in the human body, as laid out in a 2017 article from Science Daily, researched by John Hopkins Medicine. The harmful byproducts of this stress on our bodies are documented, but I found myself wondering if there might be any link with chronic neuropathic pain conditions like Burning Mouth. I can keep wondering since there are few studies and as usual with BMS, they are quite small.

However, here is what I found:

As you can see, nothing more recent popped up. If you see something, please call it to my attention! We know that stress and the hormones it produces are not good news for our symptoms, so it is worth taking a look at something that reduces stress and your chances of developing more dangerous disorders.

As a long time BMS sufferer, I know that dry air is not my friend when it comes to my burning mouth. As I researched CPAP machines and the myriad of options that come with them, I realized that the basic model sends a steady stream of dry air into your nose (if you use nasal mask or pillows) or into your nose and mouth (if you use a full mask). This sounded like a horrible option for a BMS sufferer, so I kept digging and found that you can add a few options that sounded rather helpful. Higher priced models include heated humidifiers and adjustable rates of airflow. Hmm, warm humid air that adjusts as I need it? Sounds great. Continue reading

A New Year with Burning Mouth Syndrome

Another year begins and this summer it will end my twelfth year and start my thirteenth with our little friend, Burning Mouth Syndrome (BMS).  That is a long time, but there are others out there who have suffered longer. Sometimes, much longer.

As we round the corner into 2020, what have we learned?

BMS is still a mystery. There are evidently no celebrities in the world who suffer from it (or at least they aren’t publicizing it). Diagnosis is still one of exclusion and takes dedication, discomfort, time, and resources to achieve. Most importantly, there is no cure in sight.

“Chasing the Cure” TV show, to which many of us submitted case studies for help, has been canceled (as of Jan. 1, 2020), and the BMS Support website continues to scour the globe for recent studies, information, or coping strategies to help. Have you checked it out lately? It’s free (subsidized and maintained by folks who have or whose lives are affected by BMS) and it is the only site we know of that is solely dedicated to this particular malady.

Click on the Research & Studies tab to see the latest information and alert the webmaster if you know of a study, abstract or survey that is not there! Your support is appreciated!

Facebook Support Groups keep growing, and you can join one yourself by just typing “burning mouth syndrome support group” into the Facebook search bar. The largest has over a thousand members and they hail from all over the world. You may find a perspective or coping strategy there you hadn’t considered, and if you are looking for fellow sufferers to talk with, they can be useful. Like any social media, you will find the good, the bad, and the ugly there so always do your research and run any medication-related advice past your physician.

Do you know of any physical support groups for Burning Mouth Syndrome? Let the BMS Support website know and it will be posted as a resource for people in that area.

When we share information, we all win. 

 

Traveling With Burning Mouth Syndrome

My husband and I like to travel, and we have always dreamed of going to New Zealand. The timing is right (We have the resources but aren’t too old or infirm to enjoy the activities!) and so we have planned an adventure-filled excursion. We will deal with a 15-hour flight there and back, crossing the International Dateline, and a time zone change beyond what I have ever experienced.

The question arises…How do you stay on top of Burning Mouth Syndrome under these circumstances? 

Plan, my friends, and plan well.

Make sure you have enough of whatever medicine works for you and keep it on your person. If there is lost or delayed luggage, you don’t want it to have your meds in it. Plan your coping strategies and then be sure you are keeping those with you as well. In my case, I will have a large bottle of water to sip on and xylitol gum to chew sparingly as needed. Stay hydrated. Avoid alcohol and keep your coffee and tea intake at your normal level since it can be dehydrating if you have too much. You know what your triggers are, so avoid them and care for yourself like any person with a chronic illness should.

Think about the time differences and be sure to stay on your medication schedule so you don’t unintentionally under or overdose yourself.

Be aware that stress, lack of sleep, lack of control over your diet and other factors may cause a flare of your burning. Sometimes this is inevitable and you just have to get through the flare to the other side, so mentally prepare for that and nap when you can. Stretching and deep breathing are also great ways to relieve the physical stress of travel so I will be doing that as much as I can!

Relax as much as you can and allow as much distraction and fun as you can.

That’s my plan!

Do you have some other travel tips for BMS sufferers? Share them in the comments! You never know when something you think is basic information is very helpful to someone else.

Breaking In a New Doctor – Burning Mouth Syndrome Challenges

Photo by Shopify Partners from Burst

You can find yourself with a new doctor for a variety of reasons. New insurance, moving to a new town, a referral to a pain specialist or Neurologist…these are just a few. In all of these cases, you will need to bring your new doctor up to speed about a chronic neuropathic pain syndrome they may never have heard about.

A Neurologist or pain specialist may have dealt with BMS before and if you have a choice in the matter, try to find one who has. Their experiences may be to your benefit.

However, many of us are caught in that somewhat awkward position of educating our medical professional and it can be daunting if you aren’t prepared.

First, do not let anyone brush you off with an “Oh, it’s just menopause. Or, It’s just a natural part of aging.” Ladies, I am talking to you here in particular, because there is an “older woman” category that we can be placed in and subsequently disregarded a bit if we aren’t careful to speak up. Once that happens, it is difficult to change that mental image of you in your provider’s mind. Speak up and present data if you would like to avoid this, and you should, because it is never productive in searching for diagnosis or treatment.

How do you present data? Good question! Continue reading

Chronic Pain Scale and Burning Mouth Syndrome

My daughter is a Pediatric RN, currently studying for her Nurse Practitioner exam and we got into a conversation about pain scales. I, like most of you, have always been presented with the standard pain scale by doctors and asked to rate what my usual pain level is and what it was at the time. She pointed out to me that pain measurement has been found to be variable, particularly for chronic pain sufferers.

“Mom, when you have pain all of the time, you have to ignore it to an extent just to function. The more you are able to ignore it, the less accurate that pain scale will be. That is why they have come up with several chronic pain scales,” she said.

Well, that certainly makes sense, doesn’t it? And yet in twelve plus years of chronic pain, I have never been presented with that chronic pain scale. There are many to choose from out there, but here is a side by side comparison that shows you the difference.

Regular Pain Scale

 

Continue reading

Heat and Burning Mouth Syndrome

photo by Pexels

Here’s something that has crept up on me gradually over the years and was greatly masked by the air-conditioned environment I live in. My home is Texas, ya’ll, and so hot summers are the price we pay for moderate winters. It’s expected, and to be frank, if everything wasn’t air-conditioned, I think only the hardiest individuals (along with snakes, scorpions, bugs of many sizes, and lizards) would hang out here much.

Heat and heat indexes (the temperature it really feels like) are what have inched up over the years. Texas fakes you out with the occasional string of 100 degree plus days each summer, and until some source shows you the overall trend over decades, you don’t really get that it is just flat getting hotter! I never enjoyed that aspect of Texas summers (I am a Washington State girl when it comes to temperatures!) but since Burning Mouth Syndrome has become a part of my existence, it is even worse. Going outside for a walk right now is like entering a dryer and breathing oven air for me. The hot wind flares my BMS pain more than anything else I can think of and the flare continues long past when I have retreated into air-conditioning.

Hydration and medicine help, and sometimes I even resort to xylitol discs to moisten my mouth, but often it seems like nothing pushes back that flare until it is ready to retreat. Meanwhile, I throw iced water down like a marathon runner and hope it will end soon.

Does this happen to you? Let me know in the comments!

The BMS-Support website has several articles that deal with ongoing research into the salivary system in Burning Mouth Syndrome sufferers, and although I applaud that scientists and researchers are looking at it, a diagnostic method and treatment option can’t come fast enough.

We are burning up.

Burning Mouth Fantasies

canstockphoto67880648-Marisha

(c) Canstock photo/Marisha

A friend asked the other day how I was doing. Was the burning any better? Had they found any cures?

I assured her that all was the same. I am so grateful for the efficacy of Aimovig in controlling my migraines, but it has, as expected, done nothing for Burning Mouth Syndrome (BMS). The Clonazepam ODT I take twice a day keeps the burning at a level where I can function and only occasionally do I have a flare of a day (or three) where nothing seems to touch the pain level much and staying very hydrated, sleeping and being quiet are the only coping strategies that get me through the day(s).

After we spoke, however, I found myself in a fantasy where I typed the amazing title of a blog post. “Burning Mouth Syndrome Cure is Here!” I was delighted as I daydreamed about a day when we would all descend on our doctors in droves, eager to start the totally fictional therapy that would break us out of the bars of this chronic pain prison. I imagined how gleeful I would be to write that very last post in my “Burning Mouth Journey” as I sent people on to pursue their cure and closed this shop up once and for all.

I even fantasized about what would happen next. Would I keep the blog up so that even people who didn’t find the good news elsewhere would still have somewhere to look? Probably. I would update the BMS-Support Website with a banner and then plan a “coming out” party with all of my friends. Instead of the traditional “coming out,” however, it would be coming out of pain, coming out of the community of chronic pain sufferers, and celebrating for the millions of us who would finally have both an answer and a cure.

Alas, it was only a fantasy.

One to be placed with unicorns coming to frolic outside my highrise window and talking to birds. I would, of course, tell the grackles to get lost! 😀

So, back to reality and a day of working out, lunch with a friend, and spending a bit of time this afternoon scouring the Internet for any new research, findings, or hope to share with my partner in detective work, Dennis Sharpe. He is the guy who answers your questions on the BMS-Support Website, and if you have been helped at all by the site, give him thanks. And if you come across a study that is recruiting or scientific research that applies specifically to Burning Mouth Syndrome, let us know through the site. We may add your find to the information that is there for everyone!

Wishing you a low-pain day and a good week ahead, my friends.

 

Why Do Chronic Pain Sufferers Hide?

I have suffered from Burning Mouth Syndrome (BMS) since 2008. Yes, I am in my 12th year of chronic pain and there is no end in sight.

If you have read any of this blog, you have an idea of the incredible amount of testing, medicines, and specialists I have run through and you know that I left no stone unturned in searching for a cause, a treatment, a cure, or what I settled for eventually…a diagnosis.

You may be a sufferer, whether Primary BMS (no underlying illness), Secondary BMS (burning due to other illness or treatments), a myriad of other chronic neuropathy illnesses, or you may care for someone who is suffering.

Have you noticed that they often do not talk about it? When you ask how they are, the answer you often get is, “Fine.” This is not untypical. There is something about the sheer persistence of a chronic pain syndrome that makes many of us go underground.

Let’s talk about that.

When we go underground with our pain, we do some potentially destructive things.

  1. We deny our knowledge to the community around us. Whether it is facts about our illness, coping strategies that may help someone else, or helping to define the aspects of our illness that may intrigue researchers, attract funding, and perhaps lead to diagnostic tools, treatment, or a cure; it is all valuable.
  2. We withdraw from the people who care for us, and without proactive communication, we can irreparably damage relationships that could be of vital support.
  3. We discount our importance in the world. Never thought about it that way? You aren’t alone. We feel that we are putting a burden on others when we talk about our pain or we think we are whining when we acknowledge to others that.”No, it hasn’t gone away. I have just gotten better at pasting a smile on my face.” How would you feel if someone you loved hid that very important knowledge or those feelings from you?

Something to chew on, don’t you think?