Saturday, June 7, 2014

How do I explain this...?

Do friends and family look at you like you're nuts, or delirious, perhaps a hypochondriac when you try to describe this injury? Frustrating, isn't it.

When you have pain that no one can see, you find yourself on the outside looking in a lot of the time. People just react to your complaints like you're batsh*t crazy. You can feel somewhat disconnected from "normal" people, who walk around seemingly without a care in the world, much less a constant, nagging burning, ache, throbbing, or sharp, stabbing neuropathic pain.

For many people on this blog, it's just an annoying numbness...I imagine it must be like that dead feeling in your mouth that turns to pins and needs when you leave the dentist, which typically fades after a few hours. Except it doesn't go away. Most seem to have the burning tongue in common,
Um, ok...
among a variety of other symptoms. How do you describe your tongue burning?
  • "It's like you've burnt your tongue on hot coffee. Every morning.
  • It's feels like you've scraped your tongue on the sidewalk, only there is no scrape mark there.
  • You know that moment you touch a hot stove, and you yank your hand back because it hurts... There's no evidence of a burn yet, but it stings. Imagine that my tongue just touched the stove. All the time. Every day. "

As for me, my tongue is hypersensitive to every sensation... I feel everything twice as much on the left side as on the right. This includes everything from spicy foods, to the natural curves of my teeth. I also get weird little headaches, sharp ear pain, and an achey throbbing in the teeth sometimes that feels like I spent too much time biting on a popsicle. The pain in my face feels like someone is pressing a knuckle into it. And it changes from day to day. A lot depends on weather, stress, sleep, and occasionally, I don't really know why it's hurting.

 How do you describe this to others, and what is their reaction? Reply in the comments.



16 comments:

  1. the sensitive part does bother when I'm dehydrated ...ive started on a natural supplement of lithium orotate ..i think its helping a lot ..i love hot sauces cause it helps with the aching when it comes and goes ....children don't take advice from anyone who says you should pull your teeth when nothing is wrong ...until now I've overcome a late response too burning from years prior of extraction ..i managed to rid the burning ..i now have aching on the tongue from time to time ...the burning lasted almost 3 years of pure hell ...though I've read in journals that the burning is also part of regeneration of nerves ? not sure about that one ...i don't have tingling anymore just aching from time to time or heightened sensitive a bit ...if your burning like mad !!! try acupuncture , calcium citrate ,lithium orotate , and spirulina maybe that will help ..thougth you might want to extend your intake if you need it ....for any burners out there keep up on natural supplements ...ive put my fire out so can you if you have any questions feel free to email me jakejerde@gmail.com remember i put the fire out so can you

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  2. I usually describe it as 2 to 3 clothes pins attaced to the side of my tongue, Think constantly pinched feeling. Teeth are constantly scraping against my tongue even though the other side my tongue feels like perfection. Tongue feels overly large and is always pulling tugging to the left of my mouth. Thank you so much for your blog jane, if I would of found it sooner I wouldn't of had my cusp shaved down to compensate for my burning tongue. This was before I had any knowledge of lingual nerve damage. I thought since the dentist changed the shape of lingual cusps on my molar #19 to a sharp and pointy shape, this was my problem. In reality my teeth were fine it was my nerve damaged tongue that was the problem. My story is very long and I don't have the strength to write about now, but it involves two teeth that were perfectly fine that didn't need work and myself who left this hell hole of dentist office on a feeling something bad was going to happen to only go back there and get a life changing injury. Once again thanks for your blog, just wish I've found it sooner. Any questions ask. Hope you get a full recovery somehow.
    D.J Miller Tampa, FL

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  3. Oh boy. This is a tough one. I have tried to describe the pain I feel daily to people. But I have pretty much given up. Nobody quite understand the severity of the pain. The response is always the same "So?" or "I'm sure you'll get over it." The problem is, I know that will never happen. I WILL be in pain the rest of my life, coming to terms with that was hard enough, but having to try and convince people that I am in "real" pain is even harder. There are days when I have such bad stabbing pains, I can hardly even function. But try getting time off work for a reason such as this...no understanding and no sympathy. Right now as I type this, I can hardly open my mouth, as I have severe pain shooting through my jaw. But I would never tell anyone this, I just grin (kinda, if I can) and bear it, cause I know there will be no sympathy. I tried to explain it to my Mom the other night. She told me "I know how you feel, I have this cavity..." ... I tried to tell her it is not the same, I've had cavities before, and I would exchange my current situation for that ANYTIME. I am also lucky enough (EXTREME sarcasm) that my dentist out did himself and managed to damage both lingual nerves. So I have pain on both sides. Each side has its own unique pain and annoyance. For instance, the right side of my tongue is more numb, and gets bit more when I am eating ( I still have not mastered this yet after 1 1/2 yrs). The right side actually has chunks missing. The pain on this side is mostly "in" the tongue. It feels like its burning, almost all the time. Occasionally the pain will make its way into my upper jaw and ear. The left side is another story. While it does have the burning sensation, the most painful area is in the back, near my neuroma. It will itch and severely burn for long periods. This is then followed or accompanied by extreme jaw, ear, and throat pain. This then leads to headaches, which are becoming more and more common, on the left side only. Other than the constant pain, three things really bother me. 1) Food: I might be hungry, but that does not mean I can eat! Sometimes I order food at a restaurant, take a bit and have to sit and look at it. If I am TOO hungry, I'll suck it up, eat, feel like screaming, then go home and weep in pain and misery. 2) It can be very hard to have a sensual relationship. How can you kiss someone when you can't feel, or are in so much pain you want to scream? 3) I am finishing my degree in elementary ed. I so badly wanted to teach kindergarten, but I have found out that I can no longer pronounce words correctly, or show children how to make letter and vowel sounds. Occasionally, if its really bad, I sound like I'm drunk, because I will slur.

    But I think one of the worst parts is when I get this question" Why didn't you sue?" Then I have to explain how many attorneys I've contacted and how many times I have been told that I have no case, and the dentist did nothing wrong.

    So pretty much we come around back to the initial question... How do you explain the pain to people... you don't... there is nothing wrong with me, I am not in pain, it is all in my head.

    Maybe if I tell myself this enough it will come true......... yeah right.

    -N Jones, FL

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  4. To N Jones, FL

    Double lingual nerve damage, that's horrific! You're a very strong person, I couldn't deal with what your going through. I hear alot from family how "this will pass" and so on. I hope their right, but at 8 months who knows. I have many regrets because of this injury, so many chances to avoid this freaking mess to begin with. The pain of the injury along with the regret is overwhelming. Now I also have burning mouth syndrome to go along with my nerve damage. This happened after a dental cleaning with one of those ultrasonic scalers. Warning for those who are thinking of having their teeth cleaned, don't use the ultrasonic scalers, make your hygenist use hand scalers only and only polish where necessary. The ultrasonic waves/vibrations put out by this machine to break up tartar seem to stir up the nerves in the mouth, at least for me it did. That may be fine for people who aren't depressed, but when you are it seems that the combination of depression and dental work/cleanings may lead to bms. Or it could be that the lingual nerve damage is a factor since the nerve branches are connected. Anyone else out there develop other problems after having dental work/cleanings while still having lingual nerve damage? I have more dental work to do and I'm terrified.

    D.J Miller Tampa,FL

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  5. I know that no one who has not experienced this can really understand what we're going through, and even when I have my good days, it is hard for me to fully appreciate what the bad days are like -- until they return, which never takes long. So, after several years of this, I've learned to say simply, for those who know I have nerve damage, "My tongue (or my nerve) is bothering me" and leave it at that for the most part. That's my signal for, "I can't deal with anything else right now." For people who don't know me or know about my injury, I say, "I have nerve damage in my tongue from a dental visit a long time ago. Sometimes it gets really bothersome." The reality, of course, is far more significant and nuanced, and impossible to explain, but sometimes, if people take a deeper interest, I try to explain to them how it feels, what medications I take, etc. The more difficult thing to explain is why I "seem" fine but how profoundly this injury has affected, and continues to affect, my life. In that sense, I too feel like I'm constantly hiding some kind of deep secret or leading a double-life. But really it's just that I constantly feel less than well, and therefore everything that used to be easy takes real effort, and those things that were never easy have mostly become exceedingly difficult.

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  6. I wonder if you or your readers are familiar with Complex Regional Pain Syndrome (CRPS), otherwise known as Reflex Sympathetic Dystrophy (RSD) – a neurological condition characterized by severe nerve pain. As someone who suffers from it, I have been shocked by the lack of education and awareness about it, especially in Canada. From what I have read (and from personal experience) it can be brought on, or triggered by, dental work.

    Traditional treatments often mean a lifetime of heavy drugs or anesthetics injected into the spine once it gets serious so it is worth investigating in the early stages when rehabilitation is much more easily achievable. There are practitioners out there who believe that educating ourselves about pain, the brain and the nervous system can lead to less pain – and I have launched a web site dedicated to presenting their views, and alternative ways of thinking about pain and specifically, neuropathic pain / symptoms as well as CRPS. I hope you can drop by:

    http://www.painmaps.com/

    I am welcoming submissions, stories and contributors as well.

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  7. spirulina tablets the hawaiian brand ...has very strong anti imflammatories http://www.greentara.biz/All_About_Spirulina.html

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  8. Hasn't anyone sued their doc? I had problems with my dentist in a number of ways including hitting a nerve with novocaine. I've interviewed a number of others trying to find an honorable one, and I'm telling you they get away with murder! Doesn't anyone ever make them accountable? All these stories of people's lives being in ruin trying to brave on? Isn't there a medical board or something! Reading this I'm really terrified to go back, but I have extensive work to be completed which never should have been started in the first place. They took good teeth they shouldn't have. I'm in a pickle.

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    1. Re: suing your doc, we have heard very few cases of this, largely because lawyers refuse to take the case on in the U.S. If you read through this blog, you'll see one successful lawsuit, I believe in CA, and one from the UK. I, myself, spoke with 6 attorneys; none of them was willing to take the case. They said permanent injury is a risk of any procedure. My reply was, permanent injury is also a result of driving your car, but if someone crashes into you, they have a responsibility to you financially. Any way, if you do learn of any successful suits, please SHARE! I am looking for someone to spearhead a bill in Congress to make this a punishable offense similar to malpractice. -jf

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  9. I am in my 11th month of discomfort resulting from the removal of a wisdom tooth on my lower right side. I have re visited my surgeon 3 times to complain.....each time he basically shrugs his shoulders. Perhaps he doesnt want to be responsible. IDK !!!
    Can anyone suggest a remedy??

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  10. Hi Shelby,

    Unfortunately, if you have a nerve injury, there is no remedy. Only time will tell how much you will heal. According to my oral surgeon, if healing is not complete by 18 months, then it is very unlikely the nerve will ever heal completely :(

    However, I do find things continue to improve after 18 months but extremely slowly.

    I was injured in 2010, and 5 years on, the pain has lessened considerably. It does flare up once in a while but it's so much better than the early days.

    So take heart, things WILL improve.

    Wishing all of you a Happy New Year, and may 2015 be a good year for us all!

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    1. Hi Shelby I am very happy for you. Mine has been 5 years and on bitrans pathes along with 50 mg elavil everyday. It must depend on the person. Take care!

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  11. What kind of toothpaste does everyone use? I feel like mine is worse throughout the day when I brush my teeth? I use regular Colgate mint-- maybe the mint flavor aggravates it?

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    1. not sure about the toothpaste but I think for me it's the flossing that brings up the numbness level to my face and mouth.

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    2. The flossing is what seems to bring on the numbness further for me.

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  12. I just typed a whole reply and lost it so this won't be as good the 2nd time around. Okay so 1st I didn't even know this type of injury was a possibility when I went in for my wisdom tooth extraction. It has been 6 months. It is a numbness and a sharp stabbing needly pain. Definitely notice it more in the evening. But my problem is that it causes me to bite my tongue. I have always been a nervous person and so I am constantly biting down on the numb part almost to illicit feeling but also (you know how when you have a cut and you want to squeeze near it to relieve the pain? it is kind of like that) But I am afraid that if I just keep on biting it every day it will eventually become injured! I do definitely feel hyperbolic when I am describing it to people but also because it is something I deal with every day I feel like a broken record so I just don't really talk about it. It is really frusterating and after my procedure the dentist was really hard to get in touch with and they wouldn't give me any information or anything. I felt really isolated so I searched for info online ( some if it way to frighteningly extreme) but this is how I learned what the heck was happening to me. So yeah for me it has been six months and it has healed a tad since the initial procedure but has definitely plateaued off in recent months. Makes me feel like it will always be this way.

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