Who am I and why is a nurse in Montreal putting together a burning mouth syndrome website ?
My name is Marijke (you can click on this link to hear how it’s said, if you’re not sure). I’m a health writer and a registered nurse, so I spend my work days researching and writing health information for my clients. Over the past many years, I’ve written hundreds of articles for the public and healthcare professionals. You can find some my writing over at HealthyWomen.org, WebMD.com, and several other patient-oriented sites, as well as magazines like Costo Connection, The Physiologist Magazine, Oncology Live, and Cure Today.
I also help patient advocacy organizations with their websites. For example I wrote most of the consumer-facing content for the Sepsis Alliance webpage, and many of their print handouts (Sepsis.org). A few years ago, I published a book called, Just the Right Dose; Your Smart Guide to Prescription Drugs & How to Take Them Safely. If you would like to see my professional website, you can find it at MedHealthWriter.com.
I tell you this to show you that as a nurse and a health writer, I know how to research and where to look for information. I know how to judge if that information is likely to be valid, compared to misinformation and disinformation. I even wrote about that topic for another project, Decipher Your Health (Misinformation vs. Disinformation). And as someone with BMS, I know what so many people are going through.
My experience with BMS started so long ago that I can’t tell you when it began.
I do remember, back in my 30s and early 40s, having a lot of “tingling lips” episodes. I constantly had some lip balm with me because my lips tingled. I thought at one point, I’d become addicted to lip balm. Did you know that is a thing? (Check out this article from McGill University.) So I forced myself to stop using it. It turns out it wasn’t an addiction because even though I wasn’t using the balm, the tingling continued and worsened.
Eventually, the tingling started to feel painful, like a burning sensation – both lips, from side to side. It wasn’t awful, but it was there. I didn’t tell anyone. After all, how stupid does that sound? “My lips hurt.” The pain intensified. I’d have some days and weeks even when the pain wasn’t so bad and I started to think that it was going away. Then it would intensify again.
I spoke with my dentist. He just shrugged. I spoke with my family doctor. He just shrugged. I tried so many home treatments. I researched as much as I could. I couldn’t get any relief.
I finally started to tell people
After a few years (yes, years), I finally told my husband and a few friends. I felt so foolish. Who complains of painful lips? But at this point, if we were to score the pain from 1 to 10, with 10 being the most excruciating pain one could ever have, I was up in the 6s and 7s with occasional visits up to the 9s.
I pushed for a referral to the pain clinic here in Montreal. I worked with a team there for two years. Most of my experiences with them were good, but there were two awful ones that almost negated the positive experiences. The doctor and dentist I worked with were so determined to help me find relief. We tried so many things, no matter how slight the chances were of success. Nothing worked. Nothing.
My list of drugs and treatments is over three pages long. Many times when I tried something new, I’d get some relief – not complete but enough to get my hopes up that we found something. But every single time, the pain came back full force, if not worse. By the time I turned 60, the pain was regularly in the 7s and 8s, with many days being as high as a 9/10 on the pain scale.
The pain continues
And now, in my early 60s, the pain continues. I can’t enjoy a good meal. I can’t enjoy a drink. Speaking hurts. Sleeping is virtually impossible. Some people say, “distract yourself, don’t think about it.” To them I say, “Think about the last time you burned your lip eating or drinking something hot. Now imagine that burn being a really bad burn, stretching across your lip from side to side, top and bottom, 24 hours a day, without ever stopping. Do you think you could stop thinking about it?”
Doctors who I’ve spoken with don’t seem to take this seriously because of how I look and act. I work full-time running my own freelance writing business. I make presentations when I have to speak for an hour at a time. I communicate and talk and laugh. I am a prolific quilter who loves to work with colours and fabrics. I travel when I can. I try to go out when I can. I enjoy my family, including a wonderful granddaughter who is the light of my life.
Taking all this into account – I look fine. So what if my lips hurt?
What the doctors don’t see is the pain I’m in and the effort it takes to do those things. The agony of lying in bed at night feeling like my lips are just so on fire that I can’t sleep for more than 20 minutes at a time. The way I have to press a pillow against my mouth to get that chance to fall asleep. They don’t see me picking and choosing food and drinks that have the least risk of making my mouth hurt more. They don’t feel my agony when I make a mistake and bite into something or sip something that I shouldn’t have. They don’t feel the pain when I’ve been talking for a half hour for a presentation. They don’t feel the loneliness when I skip an event I’ve been looking forward to because I just can’t put on that brave face.
For them to take me seriously, I’d have to crawl into bed and cover my head with a quilt. I’d have to stop working. I’d have to give everything up. But what would that achieve? My pain wouldn’t be any less for that. It would be there, it would be constant, and it would be the only thing in my mind. So I’m being punished because I push through that horrendous pain and I try to live life as much as I can.
So, that’s me and it’s also why I started this website. I hope that some of the work I’ve done over the years can help someone. And I hope that maybe – just maybe – someone in research and healthcare may start to understand what I and so many others are living with on a daily basis, and will try to help us.