I have generally been a strong proponent of vaccines and get my flu shot every year. Knock on wood, flu has not been a visitor at my house for many decades and I would like to keep it that way.
That said, when the vaccines came out, like many of you the first thing I thought was, “What will the COVID vaccine do to my Burning Mouth Syndrome (BMS)?”
We have all tried so many things to relieve our burning, and some may have helped a bit, but we also discovered additional triggers and things that caused flares, and so we may have become just a little more wary than our neighbors. Not because we don’t trust science, and not because we have hard held beliefs for or against vaccinations, but simply because we don’t want to hurt more.
Because I value being with my family and that new grandbaby, and seeing my friends in the future more than I fear a flare, I signed up for the COVID vaccination everywhere I could.
On March 1, the call came that I could get a first dose shot of Moderna and I ran across town to get it. Other than a sore arm for a day or so (about the level of a flu shot, BTW), there was nothing. No flare, no increase in burning, no response at all for my burning mouth pain.
I was encouraged, but had read stories of bigger reactions to the second shot, so I kept my expectations realistic and on March 29, CVS opened up to second doses and I pounced on one.
As I stood in the fairly short line to get vaccinated, I saw grown men rolling down their sleeves as they departed, with tears in their eyes and smiles on their faces. I don’t think they realized how much stress they had been carrying and now at least part of it was lifted. I got my shot, waited 15 minutes to make sure there was no immediate reaction, and drove home.
I monitored myself closely and the next day, although my arm was sore there were no other side effects and so I took my mother to a doctor appointment and the only thing I noticed was a lack of appetite. No change in BMS at all.
By the evening, things were changing and I started to run a fever (100.5) and I felt a few chills and body aches. I took Tylenol as instructed, drank some chamomile tea, and prepared for a feverish night. There was a bit of tossing and turning, sweating as the fever broke, and I woke feeling tired and still a bit achy. I checked and a low grade fever (99.6) was hanging on, but I watched it go down to normal by about lunch time. The body aches were a little slower to dissipate, but I felt good enough to do some house cleaning!
NO CHANGE IN BMS. NONE.
This was my experience, and I hope it helps to reassure you. It is true that it is just one person talking. It may not change your mind if you have decided not to vaccinate. But if you are hesitating solely because you are afraid it might make you burn more, I just had to tell you that it did not affect my burning in any way.
Good luck out there, and regardless of what you decide to do about vaccination, please keep distancing, masking up, and practicing good hygiene for all of our sake. Mutations and variants are the next big concern and you don’t want to be part of the problem.
A Burning Journey 
Thank you, that’s good to hear! I have to say I never thought about it affecting BMS and have had my first injection. If I were going to be worried, now I won’t. Thanks😊
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Thanks for commenting, Dixie!
Good luck on that second dose and I hope you are as pleased and relieved as I am!
Kalí
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I don’t know where to begin, but I got my first dose of vaccine back in jan then 5 days later got this they think burning mouth syndrome which they are not sure it was from that, I waited along time and went back and got second dose which I am not sure I have should have done. I really pray it was not from vaccine. I have already been suffering with severe depression and anxiety for 2 years and obsessive thinking, also in my mid fifties, menopausal age. I am already on kolonpin, I have been to ent and oral surgeon, tried different rinses nothing works, have had it for 3 months, my tongue feels raw, numb and burns. I am so upset, and scared about this, it never let’s up, I already have enough problems and this added to it is putting me over the edge, and could I at least be rest assured that I did not cause this by getting vaccine.
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Peggy,
I am sorry you have been suffering so much, but I must say that it is unlikely that the Burning Mouth pain has anything to do with your vaccination. You do not mention which vaccine you got, but neither Moderna nor Pfizer has burning neuralgia listed anywhere in the documented side effects and nothing has come out so far that I have read about it being found in any great numbers in the millions of people who have received vaccinations yet. Is it possible? Maybe, but I wonder if the stress of the pandemic might be a bigger factor. There really is no way to know since medical science has not found a consistent cause for burning mouth syndrome. You say you are on Klonopin – is this for BMS or your depression and anxiety? What dosage and what type (pill or orally dissolving tablet) do you use? Does it help at all with your neuralgia? You may want to see a Neurologist and discuss the treatment of BMS specifically and you don’t mention counseling of any type, but it sounds like that might be helpful as well, to help you cope with all that is going on. Please let me know how you progress in your journey, and please be reassured that your choice to protect yourself and those you love was an unlikely cause for BMS.
Kalí
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I have been going to counseling already, I have gone on burning mouth facebook site and some people say they got it after vaccine could that be coincidental, because I am freaking out that this vaccine might have destroyed my life, the pain is unbearable no relieve at all, I have been on kolopin already for years for anxiety, 0.5mg a day sometimes more I also use inderal a beta blocker for anxiety. Do you deal with this extreme pain in your mouth all the time. The tip of my tongue feels raw numb and burns and it goes to the roof of mouth and other parts floor of mouth. I have tried different mouth rinses prescription no relief and different toothpaste. Is there any hope with getting better, what are your symtoms and how do you deal, I am so at my wits end. If vaccine caused this can it get better or did I ruin my life for good, like I mentioned before I have been to counseling for this and also my other issues, not helping with this unrentless pain
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Peggy,
Again, I can only say that it is very unlikely that vaccination caused your Burning Mouth Pain. Stress is often listed by people as something they suspect was a causal agent, and it sounds like you have been dealing with plenty of it. You say you have been on Klonopin and a beta-blocker for anxiety and that your dose of Klonopin is .5 mg per day. Is the Klonopin the Orally Dissolving Tablet? If not, you may want to try that formulation and ask your doctor about a slightly higher dose. It may be more effective that way. The other medicine that Grushka, et al, found was effective for some people is Gabapentin/Neurontin. It was not great for me but has been a game-changer for others. It might be worth discussing with your doctor. I have not found any rinses to be effective on this pain. I even tried liquid lidocaine, but it merely made my mouth numb for a while and was very annoying. Toothpaste is a challenge, but I try to go with the least flavored kind that still has fluoride in it. BMS sufferers are often more prone to cavities and gum recession because our mouths get dry, so I also use xylitol discs occasionally to keep my mouth moist and fight the bacteria that can form.
Like most of us who have dealt with BMS for a while (I am marking 13 years this month), I have coping strategies in addition to the Klonopin that I take twice a day. Cold drinks are soothing for me and I am very careful to stay well hydrated. Dryness is not our friend. I avoid dry air if possible (Arizona felt like inhaling an oven to me.) and I time my medication carefully to get the maximum benefit. You can find other coping strategies on the BMS Support website and your counselor may have some mindfulness techniques that could be helpful. Lowering stress often lowers pain, so anything you can do in that area helps.
I hope this has been of some assistance.
Kalí
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Klonopin, i.e., Clonazepam, is very dangerous. I was on it for 5 months for BMS and I developed pretty unpleasant withdrawal symptoms for several months after. I’d taper slowly. Look up Dr. Jenn on youtube. Anthony Williams’ 28 day cleanse and the supplements he recommends for BMS (which he says is shingles related) have helped me.
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Oliver,
I am sorry you are in pain. I hope you got a definitive diagnosis. Klonopin/Clonazepam ODT is definitely something you want to take under a doctor’s supervision and ramping off gradually is usually a good strategy with nearly anything you take for this that is prescribed. I wish that there was a definitive link to shingles with BMS because then anti-virals might help, but that has not been the case for many of us. In fact, shingles/post-herpetic neuralgia was one of the very first things they ruled out for me back in 2008. There are many supplements and other strategies out there, and I hope you find one that is effective for you. Many BMS sufferers are low in D-3 and B12 vitamins in blood testing and some have found some relief in a course of alpha-lipoic acid. I wish I could say any of those made a difference for me, but that is not the case.
Good luck, and let us know if you find something that works for you over time!
Kalí
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Hi Peggy, i just came across this site and I hope you end up seeing my reply. I think your reaction was from the vaccine. I got my first (Pfizer) vaccine in May 2021. Two hours after I got it, the tip of my tongue started burning. Within a few hours, that burning moved all the way up my tongue. I started to ice it, and continued to ice it on and off for about 6 hours. After that, the pain was gone. But I had other, more significant side effects that followed (non-mouth oriented) that sidelined me for the next 3 months. I was very lucky I had a job that allowed me to work from home during that time. Based on my experience, I decided not to get the second shot. I hope things are better for you now. If it was in fact caused by the vaccine, please do not blame yourself and add to your depression! You were doing what you thought was right based on what the medical community was recommending. Stay strong!
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L.
I am sorry you experienced side effects from your first vaccination shot, but the burning you describe does not sound like Burning Mouth Syndrome. BMS does not disappear after six hours of icing. There is a study being done right now that will be added to the BMS Support website soon that actually defines BMS and one of its hallmarks is that it lasts for three months or more. Some of us have suffered from it for years and even decades. They may even decide to classify it as a disorder, so we are waiting to see if that will be helpful.
In any case, I am sorry you had side effects and only hope you don’t have to deal with Covid, as well. Take care out there!
Kalí
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I began having symptoms of Burning Mouth Syndrome 9 days after my 2nd dose of the Pfizer Covid vaccine, and was finally given the diagnosis in March. No, I can’t prove the BMS was caused by the vaccine, but I also can’t say it wasn’t. I have been in excruciating pain since January, and have only gotten some relief in the last few weeks by taking 100 mg of Lyrica twice/day.
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Sharon,
I am so sorry you have been diagnosed with Burning Mouth Syndrome. Did your doctor or doctors give you any idea of whether they suspected a link with the vaccine? It has not been something that has appeared in the side effects that I have researched. Were there other precipitating factors that may have occurred in the same time period? Many people link their onset with dental procedures, high stress, or allergies to new foods or medications. I guess the bottom line is that none of us know for certain what caused BMS and if and when it goes into remission, we don’t know that reason either. Mystery syndromes suck that way.
In any case, it sounds like you have found medical management to help you cope with the symptoms, and that is a blessing. Lyrica is a newer form of Gabapentin/Neurontin and that is a medicine that Dr. Grushka noted in her groundbreaking research twenty years ago. She also found that Clonazepam/Klonipin was a helpful medication in dealing with the symptoms of BMS. These two medicines (improved over time) have become the cornerstones of treatment. I wish you the very best of luck in coping with your symptoms and pray that your experience with BMS will be a short one. Keep in touch and let me know how you are doing!
Kalí
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Hello! so glad to have found this site! My mom started having BMS about a week after her first Pfizer vaccine. Never had the problem before. She is pretty healthy, small dose of blood pressure medication and cholesterol lowering medication. She said it was not as bad around the time of her 2nd dose, but then came back strong after her second dose. She has seen her primary and an ENT and they both believe it is a side effect of the vaccination. She has tried mouth washes, gabapentin and Nortriptyline without any relief. She does tend to worrier, I’m sure contributing to the BMS symptoms. She is also a smoker, not sure if that contributes to the symptoms. She is reluctant to start new medications, as the ones she has tried have not helped. I suggested an anxiety medication but she is strongly against that. Any other info would be extremely helpful.
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Melissa,
As I have indicated in responses to other questions about this, there is no indication that Primary Burning Mouth Syndrome is a side effect of the COVID vaccinations. None. If I see any I will certainly publish about it, but for right now there is not a linkage known to the scientific community or the Neurologists I have spoken with.
That said, I think your Mom’s best bet might be to consult with a Neurologist at this point. They will have access to the research and literature on Burning Mouth Syndrome and may be able to suggest alternative medications and coping strategies and answer her questions about smoking, stress and vaccinations. I hope this is helpful information.
Kalí
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The CDC must think there is a link between the Pfizer vaccine and BMS because THEY called ME and asked me for information to start a case. They then sent me some information by mail telling me how to file for financial assistance. I also did find an article showing that 6 cases of BMS had been reported as a side effect of the Pfizer vaccine.
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Sharon,
That is very interesting! Did you report your suspected causation to the CDC? The actual CDC called you, or did eHealthMe? I looked on the CDC site and still did not see BMS as a side effect but 6 cases reported on eHealthMe is an extremely small number, considering an incredibly large number of vaccinations. I will be interested to see how this turns out for you, but in following the math so far, I would still calculate my odds of contracting COVID19 and particularly its Delta Variant as much more likely than a causal link to Burning Mouth Syndrome. My personal calculus would still include the chance of dying a horrible death or having long-haul symptoms versus chronic neuralgia that is not awesome, but also not fatal. Good luck to you, and keep us informed as you go through your case!
Kalí
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Kali, here is the link:
https://www.ehealthme.com/vs/pfizer-biontech-covid-vaccine/burning-mouth-syndrome/
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My reply is to your previous comment but applies to this link, as well.
Kalí
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I also have experienced BMS after the Pfizer Vaccine in April 2021. It is now October and seems to be subsiding a bit. I am thinking as the vaccine is wearing down, so is the BMS but I have no idea. I have not reported this to any agency.
Darrin
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Darrin,
I am so sorry you have experienced this. Did you see a doctor and get a definitive diagnosis? Many other things can cause oral burning and many are treatable and curable. That medical professional can also report this for you if you ask.
Good luck, and if it does turn out to be BMS, there are some medicines and supplements that have been helpful. Keep in touch and let me know how you are doing.
Kalí
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Because of the work mandate, I got my first shot of the Moderna Covid-19 from Walgreens on 9/23/21. About a week later, I experienced BMS, particularly burning tongue. I went to Kaiser to see a doctor. They did bloodwork and said I was normal. I am not planning on getting my 2nd covid vaccine shot due to this side effect. I am still experiencing the burning tongue as of today. I have a history of depression/anxiety, and this is killing me. I have a 2.5 year old son that I am raising and it’s really affecting our playtime together. I hope it goes away soon. Eating does help ease the pain. Thanks!
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Sam,
I am so sorry you are experiencing burning in your mouth. Have you actually received a diagnosis of Burning Mouth Syndrome? Many other things can cause oral burning, and many of those are treatable and even curable. I would get more information from an ENT or Neurologist before deciding not to get your complete vaccination. It could turn out to be a risky gamble. In any case, I wish you well and hope you will check back in and let me know how you are doing!
Kalí
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Good Day,
I came down with burning mouth syndrome (specifically in my tongue) 6 days after receiving my first shot of Pfizer Covid-19 vaccine. It may have been coincidental…possibly triggered by the stress I endured the days leading up to the shot.
A week after the onset of BMS, I got sick with Covid-19 and experienced most the typical symptoms. The two symptoms that lingered were shortness of breath and coughing when exerting myself physically. In total my illness last almost 3 weeks until every symptom disappeared. I’m about 95% now with a minor lingering cough that occurs sporadically.
I was wondering if anyone else experienced burning mouth syndrome after vaccination, and if they feel it was caused by the Pfizer vaccine or if it coincidental due to stress and nerves on edge prior to the shot.
Also, I need to get my 2nd shot, but I’m apprehensive.
Thanks for your time
Gary
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Gary,
I am so sorry that you are experiencing burning and then Covid after getting your first Pfizer shot.
To address the Burning Mouth Syndrome question, (note please: NOT A DOCTOR), I assume you are still having the burning sensation or you wouldn’t have searched out and commented on this site. If that is correct, I do not think that your Covid shot had anything to do with the BMS, but that said, loss of taste and smell is a symptom of Covid and you could have already been infected before started feeling its symptoms.
Burning in the mouth does show up some of the records of side effects that people have submitted after vaccination, but the number is not large and it is difficult (as you noted) to isolate the cause/effect relationship when no one really knows what specifically causes BMS.
If your BMS continues, my personal experience has been that after eliminating all of the horses (thrush, Sjogren’s, vitamin deficiencies, etc.) a visit to a Neurologist may be your way to diagnose the zebra that is BMS. Let me know if you are able to get a diagnosis and what coping mechanisms help you…OR what caused your burning that you found treatment for! That is always the best outcome.
Re: Second shot of Pfizer. Yes, I would get it. I would also get the booster after that. Gary, you were barely protected with this bout of Covid although within 2 weeks you had it helping you, but that help will wane and I am a big fan of being protected against ICU, intubation, long haul Covid and/or death.
I hope this has been helpful and if you do get a diagnosis of BMS, that you check out the BMS Support Website. It has research from all over the world.
Good luck, and feel free to keep in touch.
Kalí
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Kali — Perhaps this information will help some others who have visited your site. Two-plus years into the pandemic, there is starting to emerge some suggestion that BMS could possibly be linked to both Covid vaccination and Covid infection itself. Here is a link to a study recently posted to the National Library of Medicine website:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8902844/
The researcher estimates these oral side effects might affect one person in one-thousand — but rare doesn’t mean it is impossible. It happened to me! I’m a healthy 65 year old with a sporadic history of autoimmune / allergic reactions. Nothing terrible, but there are some drugs that I’m allergic to, I have had a history of “mystery hives” in the past and a few other fairly mild autoimmune issues. But, generally, I am in good health and have good health habits. I have had LOTS of vaccines throughout my life with no adverse reactions.
Twenty seconds after my first shot of the Moderna vaccine, my tongue began tingling. An hour later, my face flushed and swelled slightly and I got a bit rash-y. This reaction faded and after consultation with my doctor it seemed wise to complete the vaccination series. Following the second shot there was no immediate reaction but beginning about a week later, a mild to moderate rash developed on my arms and symptoms of Burning Mouth Syndrome began to arise. Over the following months, the BMS continued to increase and the lymph nodes in my jaw swelled and ached. Eventually, my salivary glands were affected, although not seriously, and my lips were constantly extremely dry.
Long story short, I have had classic symptoms of BMS / oral side effects for the past 16 months.
Happily, my BMS symptoms very, very gradually began to decline after about six months. They are minimal now and I expect them to eventually disappear. My dentist did observe changes in my mouth and tongue. My doctor agrees that my BMS was likely an autoimmune reaction to the vaccine, although we certainly cannot “prove” that.
Several thoughts to leave your readers with: (1) there’s hope if you feel the vaccine triggered BMS, it might take awhile for your symptoms to go away, don’t give up! (2) Although the condition really, really sucked, I’m still glad I got vaccinated against Covid, because Covid is a dangerous disease, and (3) as soon as the Novavax vaccine is approved as a booster, I will get a shot of it. I feel confident that I won’t have a problem with Novavax because both the antigen and adjuvant technologies in Novavax are the same as in the Shingrix vaccine. I had no problem with Shingrix. I just think there was some aspect or ingredient of the Moderna shot that my body didn’t like …or perhaps my hyperactive immune system “attacked” what it perceived to be a viral infection with Covid and did some damage to the nerve cells and tissues in and around my mouth.
So that’s my story! To all those coping with BMS — whatever the cause — please don’t lose hope. You might consider biofeedback, which can be very helpful for all kinds of chronic pain syndromes. It helped me immensely with some serious chronic back pain issues when I was in my mid 40s.
Also: Everybody, keep up with your vaccinations! Sometimes there’s a trade-off and I do believe we don’t yet have the full picture on Covid vaccine side effects, but nonetheless vaccines DO save lives and they are a miracle of modern medicine. I’m lined up for a TDap booster and pneumococcal later this year and will continue to get all recommended vaccines, including a Covid booster, once the FDA authorizes Novavax as a booster, which is expected in late fall of 2022. And, no, I do not work for Novavax. 🙂
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Joy,
I am so glad your symptoms resolved and are disappearing. Thank you for sharing your personal experience. It does sound like an allergic reaction from your description!
Kalí
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