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.
I have had BMS for 4 years now. I’ve been to all kinds of doctors and specialists with no help for the pain. I have not tried acupuncture but was considering it. Have you ever tried it?
Deb, Yes I started trying an acupuncture protocol specifically for Burning Mouth Syndrome back in 2014. I wish I could tell you that it helped but after a couple of years of monthly treatments, I noticed no difference in my burning levels. Acupuncture, in general, is a good stress reliever, but for me, it stayed in that category rather than an effective treatment for my pain. You can read about it on the BMS Support site at Italian Acupuncture BMS Trial . It may be worth a try if you have a practitioner who is willing to do it!
I have had BMS for 9 years (just found this blog, which is great.) I have tried acupuncture with two different practitioners and it didn’t help me with pain either. Although, yes, a good stress reliever!
I am glad you are enjoying the blog! Have you found any coping strategy that has helped you?
I’ve suffered with BMS for 10 years and have tried everything including acupuncture which didn’t relieve the pain. Has anyone got any suggestions to relieve the persisting burning.
This blog and the BMS Support Website can give you many strategies that may help with the burning. Have you seen a Neurologist? That was finally the specialist that was the most helpful for me in finding medications and minimum dosages that could take the edge off my pain and give me back my life. Read through other articles for coping strategies on this blog and check out the most recent research on the BMS Support Website. Feel free to ask any questions you have that wouldn’t require a doctor!
Best of luck and I hope you find the combination that helps you.
Has anyone tried capsaicin in capsule form? I find I get a little relief. I found a couple good companies on Amazon. I take 1500 mg a couple times a day. One of my neurologists had me on Cymbalta for awhile and that actually helped for awhile but I think capsaicin does just as well.
I believe many of us try capsaicin first in some form. It is cheap, doesn’t require a prescription, and if it works, Awesome! Unfortunately, I have not known anyone who found long-lasting relief from it. I am glad it is working for you, and if it is as effective for you as a prescription med, then that is definitely the way to go.
Best of luck,