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Burning mouth syndrome symptoms ongoing

Discussion in 'Support Subforum' started by Louise D, Aug 13, 2023.

  1. Louise D

    Louise D New Member

    I've been dealing with burning mouth syndrome symptoms since 4/18/23 when I got two dental fillings placed. I am so frustrated with the inability to rule out non-TMS reasons so that I can approach this fully as TMS. I saw an allergist two weeks ago to rule out allergy or intolerance and he was very non-committal and just came back with maybe, maybe not types of answers. I also asked about a blood test that a biological dentist recommended years ago that was purported to determine which materials you are intolerant to or not. I was hoping the allergist would say that it was fake science. He was non-committal about that as well. He offered patch tests, where I have to go back to the dentist (who intimidates me) and get the materials in a form the allergist can use and put the patches on for 48 hours and then see if my skin reacts. I'm guessing that won't be cheap if I can even make myself ask the dentist for what she is going to think is crazy. The blood test looks to be about $500 as well if I can find a provider to order it. If I were betting money, I would say this is TMS, but it has been almost four months now and is only getting worse and now the allergist appointment had the opposite effect I was hoping for. I feel like the only way out is going to be to pull these teeth and I don't want to lose any more teeth. I'm just really struggling right now.
  2. Cactusflower

    Cactusflower Beloved Grand Eagle

    Hi @Louise D
    It really comes down to you making a decision, and beginning to feel like you have some control over your situation.
    Have you begun any tms work?
    If not, I suggest you begin. You can do it while you explore other things, and begin to suss out fully where you want to go with this and how you want to treat it.
    You’ve posted many times, and it is pretty much only about the physical processes you are going through. I’d like to bring you back to Dr. Sarno’s “think psychological”.
    This forum is about the psychological, the personality, the interior landscape of our being that is causing our nervous systems to create symptoms. Your medical providers are going to do what they are trained to do. They want to help you, but each has their own special training and I think you are looking for a consensus.
    I totally understand the need to chase the physical, we’ve all been there. However, is there a real reason you can’t chase the tms? Usually the reason is simply resistance. Another tms brain mechanism.
    Reminding yourself that tms work treats the anxiety, the fear, the beliefs we have about ourselves, the anger, frustration, sadness etc in our life that we have pushed down and hidden from ourselves is important. The side benefit is reduced pain.

    You are really pressuring yourself to get out of this pain and to do it asap and to put your power to do so in the hands of others.
    This woman had burning mouth syndrome too, her story is long but empowering!
    JanAtheCPA likes this.
  3. Louise D

    Louise D New Member

    @Cactusflower , the main drive behind finding resolution to the source of this is that I need more fillings. Whether it is a true intolerance/allergy or TMS, getting more fillings could really amp things up. In the case that it is an actual physical issue, that would also increase body burden dealing with a "toxic" insult on the cellular level. Not dealing with the cavities that need filling means more tooth loss. Beyond that, I need a lower partial denture so that I can get back to eating better, as well as stop my remaining teeth from shifting and the upper teeth that have no teeth below them from super-erupting. The dentist said that I should get the teeth that the partial will attach to done - as in the needed fillings - before getting the partial so that there wont' be fit issues from getting the partial first and then getting fillings on those teeth. That is where the rush is coming from.

    I do try to approach it to the extent that I can from the TMS/emotional side of things, but it is always an obstacle when the physical can't be ruled out, as I'm sure you know. The problem with the emotional foundation of TMS manifestations in my life is that the emotional won't ever really be resolved. It's all to involved to unpack here, but it involves religious abuse over four decades and complex PTSD. I have been through years of counseling/psychotherapy. My counselor was amazing and fully recognized the complexity and difficulty of the situation. I would still be working with her if she hadn't retired. Given the strong God component, which of course, no one else can really solve for anyone else, I see myself as working on a way to incorporate it into my life in as least disruptive a way as possible. Have you seen, "A Beautiful Mind"? I don't have schizophrenia, but I would use the movie as an analogy. He could not be rid of the hallucinations, but he could recognize that they were hallucinations and try to deal with it as best he could. The emotional issues will likely remain with me the rest of my life, as well as the fear of God and all that goes with that, but if I can recognize it and see how it has worked its way through to the surface in my body through TMS issues in the past, it can help me with present and future manifestations to at least not panic. The problem with this issue is that I am truly struggling to rule out the physical, while there is pressure to move forward in ways that could make things much worse - physical or TMS-wise.
    Last edited: Aug 13, 2023
  4. Cactusflower

    Cactusflower Beloved Grand Eagle

    @Louise D
    It's still a choice. I see that you are in the "making excuses" phase. This is pretty normal. Most people with TMS think their case is vastly different than anyone elses.
    What I see is fear.
    You mention your fear of things getting worse (we all do). What if you had the fillings and your mind realized that you simply needed fillings and you were OK!
    What if the threat is some crazy mixed up subconscious jumble of things that isn't real in reality, it's just "real" to a subconscious that has no understanding of time or space. It just sees FEAR, AFRAID, TERROR, "That THING" looming. To use another analogy, it's kind of like one of those crazy roadside attractions from the past (that still exist!). The giant billboards that say "SEE THE THING". They don't tell you what the thing is...and when you are a kid, it seems real. I mean who would put a zillion billboards up if it wasn't REAL. You get a little anxious, a lot excited. You want to see the Thing to see if it really lives up to the horrible image you now have in your mind that is THE THING. You pull into the parking lot and need to use the facilities immediately. You are tingly, full of energy. Now you want to face the THING, but at the same time you want to run from The THING. You cling to your families hand. You drag your feet. Fear clutches you in it's grips. And then you go to see this STUPID thing that is just a 30 year old manikin that is covered in paint and some old papier mache and bandages. WHAT A LET DOWN - but now you can relax and sometime later, you can even chuckle about how you were fooled, by THE THING.
    Trust me when I say, I DO understand where you are coming from.
    Challenging these fears is very very scary.
    Sometimes you just have to do it. It feels like it will eat you ALIVE before hand, but it really is just the THING. The THING is the anxiety, and the unknown. It's not the physical.
    And perhaps your mind will do a freak-out.
    Things could get worse FOR AWHILE.
    But you'd have the fillings and that would be over with, and then perhaps that might clear the way for your healing.

    It's really just being open to all possibilities, even with the fear and anxiety looming.

    We are absolutely here to support you, and most people are are simply MUCH better at supporting emotional journey.
    backhand and JanAtheCPA like this.
  5. Louise D

    Louise D New Member

    @Cactusflower , I appreciate the time you have taken to respond. I do have to respectfully disagree with your assessment of me. Given that this is a message board, it is impossible to go into all the details of one's situation. It is disconcerting to me to be told that I am making excuses based just on what I have shared and then be told that you understand me. I do not think you do. You know a tiny snippet of a larger picture. You don't know me. I don't mean to be unkind or rude at all. I am just somewhat surprised to be analyzed so quickly and put in a box.
  6. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Sorry you're still suffering, @Louise D, but I have to say that I agree 1000% with everything @Cactusflower has said to you.

    You're not going to get a different answer on this forum from anyone who has done "the work", because this is our focus. The details of your obsession are irrelevant to us - the obsession itself is what we are always going to focus on.

    Do we tell people to have new symptoms checked out before assuming they are the result of emotional distress? Yes, of course, because we are not medical professionals, and it would be tragic if someone did not receive appropriate treatment for something which obviously needs treatment upon a proper examination. But the typical forum user only needs to be reassured one time that "we can't find anything wrong" in order to abandon their obsession over physical causes and make a commitment to working on their mental health.

    We are here for you if and when you are able to do that!
  7. Louise D

    Louise D New Member

    @JanAtheCPA , thank you for taking the time to comment as well. I can only say that there has to be a miscommunication in here somewhere. At no time have I received word from a medical professional that it can't be an actual physical allergy/intolerance to the materials placed in my mouth. I have not received the reassurance of which you speak. (For that matter, causes of burning mouth syndrome as listed on the Mayo Clinic website, as well as other respected sources, actually include allergies or reactions to dental materials). As to the dentist who placed them saying they look good to her, I would certainly expect her to be pleased with her work, but we're not talking about how intact the fillings appear upon a visual examination.

    It is somewhat triggering to my complex PTSD to be portrayed as someone who has not made a commitment to working on their mental health, especially after working for over 8 years with an expert in trauma, who did not perceive me as you do. She, in fact, understood the issues that were intractable. And, of course, she spent her whole career in mental health up until retirement and knows me very, very well. I don't understand how people who read a few details on a message board are so confident in their own ability to read someone that they can definitively categorize and assess them. It is your forum, however, and I will need to respect your right to do that and not expect to find something else here.

    I do think you are right that I will not be approached any differently by anyone here who sees themselves as having done "the work." I have picked up on how people are addressed here by those who identify as having done "the work," and I don't just mean me. They are not the people I have been hoping to hear from. When I have come here, it has always been with the hope of communicating with someone who has experienced similar symptoms or similar obstacles or who is still in process. I find the comments of those still in process very inspiring. That does not seem to be who I connect with, however, and I probably ought to accept that won't happen here and just continue to benefit from reading them on their posts.
    Last edited: Aug 13, 2023
  8. Louise D

    Louise D New Member

    @BloodMoon , I want to thank you so much for your reply earlier today. I don't know for certain why it's gone, but it was so very helpful to me. I did have to work today, but I read it earlier and could not respond until now. Fortunately, I took screen shots of it, so I have it and can re-read it and process all that you shared. You have been the most helpful person to me so far in my TMS journey and so I am glad that I posted after all. I don't know if you will see this, so I won't take the time to respond specifically to your comments, but if you can see this and you let me know, I would be happy to reply more fully. I would have simply private messaged you if I had found an option like that. Thanks again. You are a rare encouragement.
  9. BloodMoon

    BloodMoon Beloved Grand Eagle

    Hi @Louise D,

    I'm pleased that my reply was helpful to you and thanks for letting me know that. I took it down because I read through it and thought that it probably wouldn't help you very much, if at all. I do most of my replies in a Word document before posting them, so by default I kept a copy, which I'll repost below (as, although you have kept screen shots, I guess what I wrote might be helpful to someone else suffering from burning mouth as well). There's no need to respond specifically to my reply unless you would like to and it would be helpful to you, but if there's anything you'd like me to comment further on, just let me know. (I have added to what I originally wrote just a little bit, to expand some points.)

    Hi @Louise D ,

    Just so you know where I'm coming from, TMS-wise I am still doing 'the work' but I am feeling much better now from doing my own version of 'the work' than I have done for many years. (At one stage, I had periods of being bedridden for many months -- for 7 months on one occasion -- due to severe muscle pain, muscle spasming and fatigue.)

    I experienced and was diagnosed with burning mouth syndrome after I had an extraction (bottom jaw, the molar next to the wisdom tooth).

    My burning mouth pain was with me for a long time but it eventually went away when I had virtually exhausted all possible medical advice. It finally dissipated after having the extraction site thoroughly inspected by a expert at a major dental hospital in London (I'm a Brit and had to wait my turn on our National Health Service to be seen) and they found physically nothing wrong and after being offered a drug by them that was developed for treating anxiety but apparently had the side effect of helping reduce physical pain to include dental pain. Having tried a couple of similar drugs for my so-called 'fibromyalgia' (with which I had been diagnosed many years before) and finding the side-effects of those drugs intolerable, I declined.

    I then resigned myself to suffering the burning mouth pain -- coping with it by using heat packs and over-the-counter (off prescription) painkillers, possibly for the rest of my life -- which was a depressing prospect at first, but then I got to remembering how my other numerous bodily symptoms, often extremely intense, either fizzled out completely or reduced to a tolerable level over time. Anyway, once all the investigations were over with (albeit it I didn't have allergy testing) my burning mouth pain very gradually disappeared and my TMS moved on to paining other parts of my body, the way TMS is more than inclined to do. As far as my brain was concerned it had 'hit the buffers' and there was no mileage left in trying to get my attention by paining my mouth.

    I should also mention that the opposing tooth in my upper jaw, fortunately, didn't experience super-eruption, even though it has never had anything to bite against (no denture or implant) since the extraction - I understand that unopposed teeth don't always experience this, it depends on factors, explained to a certain degree on wikipedia https://en.wikipedia.org/wiki/Overeruption (Overeruption - Wikipedia) (that is if super-eruption is the same thing as over-eruption).

    The allergy patch testing and blood test will, as you say, probably be very costly. If you have them and they don't show any sensitivities it could be viewed as a waste of money and time or it could be viewed as money and time well spent... possibly well spent because you will know (with regard to your present circumstances and choices that you need to make) what's what allergy-wise and therefore what's what allergy-wise regarding any more dental work that you might need sometime in the future (albeit I understand that allergies can suddenly develop at any time out of the blue, but I won't tie things up in knots discussing the chances of that possibility).

    If you don't have the tests done, if it is TMS causing your burning mouth, your brain may keep on keeping on TMSing by continuing to give you the symptom and possibly increasing the pain after if you have the fillings you need and the partial denture fitted. And, even if you do have the tests and they come back negative for allergies, your brain might still keep on TMSing in that way and may make you question whether there is some other physical reason for your mouth pain. From my personal experience with other TMS symptoms that I've suffered, unless you believe that it is more likely that it's TMS causing your pain or other symptom(s), more than you believe it isn't TMS causing your pain or other symptom(s), the TMS symptom(s) in question are very unfortunately liable to continue (possibly for quite some time, until your brain perhaps decides that it isn't getting the response it wants from you through paining your mouth, and then it may decide to pain you somewhere else instead).

    I can't and you wouldn't want me to try and make up your mind for you regarding what you should do, of course... so all I can say is that these days, because I've been through the wringer with a whole myriad of painful and debilitating symptoms over many years that I strove to find a physical explanation for (before and after I'd heard about TMS), I choose to enter into a moderate/average amount of medical investigation into new symptoms and if no physical cause shows up, I consider it to be TMS (and I therefore take the risk that I might be suffering something more unusual or rare that is causing the symptoms).

    With dentistry I opt for fillings or crowns that are the least likely out of the options available to me to cause problems/reactions in most people. If dental allergy isn't all that rare, then I'd probably opt for allergy testing before considering my burning mouth to be almost definitely TMS; if dental allergy is pretty rare, then I'd probably skip the allergy testing and risk money on having the dental work done, but I can only speak for what I would do with my history, personal experience and circumstances. (I actually do have two non-TMS rare conditions but they were discovered relatively easily - one was an incidental finding on an MRI scan and the other displayed such symptoms that it couldn't be anything else, although nevertheless I often think that it might be TMS, but as I'm not receiving any treatment for it and just put up with the symptoms, it matters not - because if it's TMS, one day it will just disappear, with the TMS work I'm doing.)

    The TMS brain is essentially an angry worry wort and I find that if I concern myself less about what's going on with each symptom when it appears and try and get on with things as much as I can, despite how awful the symptoms are, it can make my TMSing brain 'hit the buffers' and stop giving me that symptom...The anger I'm still working on with increasing success with regard to reducing TMS symptoms. Ideally, you need a quick resolution to your burning mouth so that you can know that it is TMS and put it behind you and get on with the dental treatment you need, but the reality is for most of us who aren't a 'book cure' is that recovery from TMS doesn't happen quickly, so unfortunately it's not easy. I wish you well with your decision making.

    P.S. I think the reason you haven't had other replies (not as yet, anyway) from people who are still doing 'the work' is that they may be trying to avoid discussing and thinking about specific symptoms as part of doing 'the work', plus no one can really advise anyone else at what point it is appropriate for them to abandon looking for a physical cause and consider a symptom to be TMS, albeit they can say, of course, as I have done, at what point they personally stopped and about the 'journey'/process they went through that led to that point as that might be of some help. I think another possible reason is that back pain and hip and knee pain, for instance, are more likely to bring people to this forum (indeed Dr Sarno entitled one of his books 'Healing Back Pain') so it may not occur to people that burning mouth could be a mind/body TMS issue, so there will likely be a much smaller pool of people on here who are experiencing or have experienced burning mouth.
    Last edited: Aug 15, 2023
    Louise D and JanAtheCPA like this.
  10. Louise D

    Louise D New Member

    @BloodMoon, thank you so much for re-posting and adding other comments. I have kept meaning to come back and respond more, but it has been a busy time with my adult kids, as well as another health scare (not TMS-related, but which did turn out okay after testing). I have a mitochondrial deficiency that keeps me pretty low energy, so when it's used up, it's used up. I should have said thank you sooner, though, and if I get the energy, I will respond more.
    BloodMoon likes this.
  11. BloodMoon

    BloodMoon Beloved Grand Eagle

    No problem, @Louise D. I quite understand. Thanks for letting me know and no pressure at all to respond. I hope you will have much better energy soon.
    Louise D likes this.

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