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Discussion in 'Support Subforum' started by Kalo, Nov 24, 2018.

  1. Kalo

    Kalo Well known member

    Hi All,

    I have not posted in a while. I doubt anyone can give me help. But, I just need some type of response.

    7 months ago I developed TMJ...It is joint related as it was confirmed through a CT scan that I have disc displacment without reduction.

    My symptons are crepitus a.k.a grinding sound and a slight clicking and cracking with limited mouth mobility.

    I have tried to consult via email a TMS doctor who won't look at my scan and tells me he believes all my problems are stemming from muscular and not the abdnormalites. It is hard to believe because I NEVER had joint noises until chewing gum locked my jaw up.

    As stated it all went down when my Mom died 3 months and I had just lost my job right after and was fired unjustily. It took me 7 months to get a job at which that time I had to sell alot of things just to pay the bills. I was also my Mom's primary caregiver and have a lot of trauma watching her die.

    I am 54 years old, never been married and my childhood was not all that keen. I don't have a good support group and don't know who to turn to...

    The worst is reading all the TMJ failure surgeries that have made it worst and there seem to be no help for this...

    I am just scared that my issues will get worst..I did the biggest mistake and that was going on TMJ.org website and you see all these woman who suffer at least they were honest to say after 13 failed surgeries and they suffer worst.

    Why does this problem to mostly happen to women? There is theories that estrogen has a lot to do with it...But I think the TMJ.org is reaching....Because there is no answer....

    I keep thinking what is the worst that can happen...My jaw closes shut and I will have to drink smoothies for the rest of my life...But it really sucks when co workers are able to eat pizza and have fun and I can't...

    The only thing that is getting me through this is benzo's as they help me relax and cope but I don't want to take to much of them....What options do I have??

    I try to make the best out of this...Since my Mom died 7 months ago, I had a friend who was only 47 years old who passed away....

    The wierd thing that scares me through all of this is in all the studies I have seen it seems that lonely people are twice as likely to get sick....

    I never chose to be by myself...I had hid my sexuality confuse so deep I never dated anyone...I wanted to be like everyone else believe me. It's not easy being a woman with no kids or husband....I have contemplated being gay and well I don't like my self that way. I don't fit in the gay community either....

    I ask God to help me with TMJ to give me a second chance so I can find out and live life fearless but I falter...

    I wonder if booking an appointment with Steve O could help, but, what is he going to tell me...

    The worst part is on this forum I have seen people with muscular TMJ that has been cured, but, my is joint TMJ...

    I have journaled about my past, and forgave my Parent's who meant well but taught me not able to survive on my own...

    I have had Learning Disabilities with a slight forum of autism and I was never helped with and found out I was born to a mother who gave me up for adoption...

    I was always a nervous child who was therometer was kicked on HIGH...Gabor Mate says this is what happens when the Mother and child do not bond...

    Any words of wisdom might help and I would be greatful...The Holidays are bad because last year at this time my Mom was lying at death's door with diapers and I miss her so much...

    Thanks Kalo
  2. AllyC

    AllyC New Member

    Hi Kalo,

    I’m new here, so I don’t have much to offer in the way of advice, but know that you aren’t alone.

    My husband has suffered from TMJ for 12 years and doctors aren’t of much help. He refuses surgery, which I agree. We’ve been doing a lot of emotional work together lately and his jaw has been much less tight as a result. He also finds great relief from CBD oil, as it brings down inflammation and calms the nervous system. It won’t cure TMS, but I figure any way we can support our nervous system is a good thing!

    You’re right to say that loneliness is bad for your health. It is! I find the best way to get out of it is to put yourself out there by helping those less fortunate. Volunteering at a soup kitchen, shelter, or the like will help you to make connections and also to see where you are fortunate. My dad used to tell me the quickest way to forget your problems is to help someone else with theirs. If you have a community center around you, join it and see what events they have coming up! Sometimes there are game nights, book clubs, or potlucks where you can go mix and mingle with others in your area. Be open to the possibility of new things. It’s never to late to grow, change, or learn something!

    Hope that helps a little. Take care.
    readytoheal likes this.
  3. Kalo

    Kalo Well known member

    AllyC, Thank you for your reply. Can I ask a question, does your husband have any abdnormalities in his jaw joint. That sad thing is my MD said that it's only going to get worst from here on out...That ass gave me a nocebo...

    Mine is TMJ anterior disc displacement which means my condyle is pulled forward which makes my mouth have small opening...So is your husband muscular or joint related.

    I will try that CBD oil ...Is is hemp?

  4. AllyC

    AllyC New Member

    Yes, CBD is from the hemp plant. It’s not psychoactive and is legal in all 50 states :)

    My husband had a set of X-rays done by an oral surgeon about 10 years ago. Neither of us can remember the exact diagnosis, but it is bone/joint related. They basically said they would have to break his jaw, shave the bones down, and reset them. Doesn’t that sound fun?

    I haven’t gotten him to read any TMS literature, but simply the knowledge that his stress/emotions can cause jaw pain has helped him. I know if I can get him to do some reading that he would make big strides in his pain, but alas, he’s a stubborn man. So I try to focus on what I need to do to heal and lead by example.
  5. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Kalo,

    I am sorry you are having such a time of this, and about your mother. I recall that you were taking care of her. I think it is wonderful the support which AllyC, a newer member is offering you, with her direct experience and reaching out with care.

    Whether or not AllyC's husband has the same kind of TMJ, I urge you to understand yours a curable with TMS techniques. I suggest you look deeply in the literature for support. For instance I recall Dr. Sarno saying even "bone on bone" hips Rx'd for surgery were not necessarily the actual source of the pain.

    I listed five things you said above which support your diagnosis as TMS. I think this is important: gather the pieces which "rule in TMS" in your case.

    Women have more mind-body conditions than men, and Dr. Schubiner feels that this is because women are more conditioned to give up their own needs than men.

    Gabor Mate has deep experience and insight into mind-body connections. Your feelings and history may fit his understanding.

    Steve O has said that loneliness is one of the greatest contributors to TMS.

    You know that challenging emotional events can kick off TMS, and your experience of your mother and your work support this as being what is actually happening.

    A TMS doctor supports a muscular TMS diagnosis, as I understand your post. He knows whether or not muscles can cause your symptoms.

    All this from chewing gum. Think about that for a moment. Classic. Like bending over to pick up a piece of paper, and now they recommend back surgery.

    Finally, I will remind you that a very basic medical understanding is that all pain is physical. Physicians will find any reason, based on no empirical findings, to pin pain on physical anomalies which are seen to be there. This is the only way uninformed --but well meaning doctors know to diagnose, and they can make a whole career out of finding and describing a new, and as yet unknown condition. 10s of thousands of pages describing, and patients diagnosed with 100s of named conditions --all of which are sadly made out of thin air. I urge you to not go down this road.

    I hope you can catch yourself and with love and self-compassion gently bring yourself back to the support offered in the TMS education. And you might start with an "evidence sheet" which I kind of started for you. Read it every day, and contemplate and reassure yourself that there is nothing physically wrong.

    Yes. Call Steve O. Why? He will tell you that you have TMS, because he knows how confused the medical field is about pain, first hand.

    Wishing you the best outcomes!

    Andy B
  6. Kalo

    Kalo Well known member

    Hi Andy,

    For me I can handle TMJ if it were muscular in nature. But I hear a crepitus (sand grinding) clicking and popping in that jaw that happened after I chewed gum...When I got the CT scan and saw that the condyle was pulled forward, it's kind of hard not to believe that it isn't structural.

    When I emailed a prompt TMS doctor he told me told me the inability to not open my mouth wide was due to muscle and didn't care about the structural....Maybe if I went to see on for examination it might help...I thank you for all the points you brought up about when it happened....And I also thank AllyC

    I think my biggest fear is the that bone becaomes more deformed and really causes problems and like I stated going on TMJ.org was horrible, but, at least the owner of the site says LESS is MORE meaning no surgery as it can make things worst....

  7. MindBodyPT

    MindBodyPT Beloved Grand Eagle

    Yes, it is scary to see CT or MRI results with "abnormalities." Our current medical system makes a lot of these things on imaging, when in reality they are totally normal results of the body aging and will not cause chronic pain. Clicking in joints is really just air popping or tendons moving, it doesn't mean anything. Lots of folks have always had clicking joints (including me!) and never had any pain associated...bodies are just funny like that. The TMS doc is right. Going on a TMJ site with everyone else scared about their condition is bound to freak you out! Stay away from that kind of stuff. All of us will get arthritis and "bone abnormalities" with again but it's benign and nothing to fear.
  8. Roxygirl577

    Roxygirl577 Peer Supporter

    Hi Kalo, you're story sounds very much like mine. Hopefully I can offer some advice, as I have dealt with this for almost 17 years.

    I too suffered disc displacement from chewing gum (although I think my jaw was already compromised from wisdom teeth surgery years before) ...my jaw locked up due to this and I was unable to open past 10mm...they tried all sorts of therapies and nothing worked and my jaw got progressively worse until five years later I was unable to open past 4mm. My jaw had completely fused together and I had no choice but to get a total TMJ replacement. I was also scared out of my mind due to horror stories I had read, but I knew I had no other choice. I couldn't brush my teeth or barely eat. I'm not meaning to worry you at all..my doctors have all said that for this to happen is extremely rare, especially for someone of my age..I was 20 at the time. Luckily my TMJ surgery went great, I did have some nerve damage, but my jaw was finally able to function normally, I was able to open 25 mm, still not ideal, but my muscles had atrophied after years of not using them. Once again, not trying to worry you..I am just trying to let you know that number 1, I totally get it, I've been there...number two...if you cannot open your jaw and it is getting worse, weighing your options for surgery is not something you want to rule out. There are wayyyy more cases of it helping tremendously then causing more harm. Like my husband always says...no one really gets on the internet to talk about what went right, if something goes right then you go back to your life and no one online hears about it. Number 3....and this is the most important... Yes I had and have a physical problem...in fact I am due for a new TMJ replacement in a few months. I will have to deal with this my whole life...BUT ...other than a few days after my jaw locked up 17 years ago...I had absolutely ZERO pain from any of this! My doctors were amazed...my jaw literally fused shut..bone on bone for years, I had no disc...nothing...and I had NO PAIN. I believed Sarno when he said in his books that this did not have to cause me pain, and it didn't. Did it still suck that I had limited movement and had to go through a surgery? Yeah, definitely...it was so hard....but that's all I had was limited movement. I never had to take a muscle relaxer, or even an Aleve, because I knew deep in my heart that this shouldn't cause me pain.

    Do I suffer from TMS? I certainly do...but mine is less pain, and more mind (OCD, depression, anxiety) My mind knows I don't believe in most chronic pain, so it doesn't give it to me. Anxiety scares me like hell...so that is what my mind uses to distract me from emotional shit I went through all my life and how I tried to please and save everyone. I am working on all that
    ....but this was all to let you know that it is possible to have a physical problem and still not "suffer" from it...if that makes sense. My jaw has been an annoyance at times, but it never made me suffer. Just something I had to deal with and will have to deal with.

    Please don't let what i said make you think this will happen to you...but at the same time, be proactive and make sure you rule things out...go to appts and make sure your jaw is not progressing into something that can't be reversed...but don't let them tell you it should be painful, that is BS! I told them not to even give me pain pills because I would throw them out. Our bodies can adapt to almost anything, it's amazing.

    If you have any more questions, please feel free to ask me, or private message me...

  9. Kalo

    Kalo Well known member

    Hi Roxygirl...

    I am not going to pretend that what you have written doesn't scare me. I have been 7 months of jaw popping, creptitus and my mouth opening is 2 1/2 almost 3 finger opening.. I can still get food in and stuff, but, there is some stuff I am limited in.

    OMG, the TMJ.org is scarey and they always advocate to not do anything irreversalble....

    I have muscle spasm as well, but, its not as painful just tight along with the noise joint....I pray it gets better and I have heard that the body does adapt as it is a healing mechanism. When I was on TMJ. org they say that many people have disc displacement and don't even know it. I also read another research that states that there were asymptomatic people had internal derrangement and don't even know it. How can this all be... why do some people have these abnormalities without problems and there is other that have problems.

    As matter I asked the TMJ specialist who did the CT scan on me if this is the worst she had ever seen and she said not in the least.

    I asked what was the worst and she said she had a guy who came in and she did a CT scan on him and he had BONE ON BONE IN BOTH JAWS with NO PROBLEMS. He basically went to the TMJ specialist because he thought he had TMJ Sleep Apnea. When she did the CT scan she found out he didn't have sleep apena cause by TMJ but he had a deviated septum.

    I asked her if he was going to do anything with regards of his bone on bone joints and she said no because he had no problems..

    I am praying that there will be an adaption phase in my joint but I am starting to wonder if I should go to a oral surgereon for an MRI...I am so torned on what to do...

    So if SteveO had so many abnormalities with his back and so many other people have abnormalties and don't need surgery why is it so different from the jaw?

    I am in awe of yor bravey and will probably PM you if I should have more questions....

    Last edited: Nov 25, 2018
  10. Roxygirl577

    Roxygirl577 Peer Supporter

    Hi Kalo, I'm truly sorry that my post scared you, that was in no way my intention. I just wanted you to know that I believe 100% that even in the case of a physical abnormality, TMS can take hold of it and turn it into a monster. All of your research about finding people that had bone on bone, or disc displacement and are asymptomatic is very true. I did years of research and found there was no strong correlation between pain/muscle spasms and jaw joint/disc abnormalities. i never even suffered from any spasms in my jaw. No pain, nothing...just limited mobility.

    Like most people said above, just because you have crepitus/popping...doesn't mean it is not benign. I have crepitus in many joints and there is nothing wrong with them. The noise by itself is not an alarming thing. But if there is limited mobility then it is wise to get an MRI or cat scan to make sure that there is not a major problem. Even Sarno reminds us to get things checked out first. I know that is hard because doctors tend to throw out worst case scenarios and add fear to our already vulnerable situation. But just keep reading Sarno and remind yourself of these studies, and of me, that this does not have to cause pain or even spasms. Also, if there is something wrong it can get better! Like I said, mine was very rare. I also waited too long to do certain therapies that probably could've helped. Have you tried splint therapy or physical therapy. You can still go down that road and believe in TMS, the key is to not have fear.
  11. Kalo

    Kalo Well known member

    Hi Roxygirl,

    I have not tried splint therapy....At least I should at night....The TMJ Specialist wanted to try to recapture my disc with permantley wanted to do reposition splints that move the jaw forward....I would have to wear it for 9 weeks and the prolo therapy and a night splint all for $4000.00 dollars.

    Again, I was told that irreverasable changes in the bite from splint therapy can make it worst. I didn't really trust her either...Cause repositioning my jaw would probably make my bite go off and what if it doesn't work...

    Ugh, so many things and it is hard to decieded....

    Do you want me to PM you or would you mind telling me who did your surgery....That in itself is hard to pick is a good oral surgeon....There are so many quacks...Like Larry Wolford out of texas....And then there is Marc Piper doing fat graft stuff all of it costing 50,000.00 with not scientific proof it helps....BTW, Larry Wolford has so many bad reviews and it clearly out for money...

    Any how thanks so much for your advise.....Thank you really....

    I would love to come back and right a sucess story without surgery....

  12. Roxygirl577

    Roxygirl577 Peer Supporter

    Kalo, I will private message you tomorrow
  13. Kalo

    Kalo Well known member

    Hi All,

    First let me start off by saying thank you for all the responses that you all gave me...

    As I was re reading the thread, I feel like this is starting to talk way to much about structural abdnormalities and surgery. And my doubts regarding whether this is TMS....I am thinking I should delete this thread because in away it has kind of given me a nocebo....It's nobody's fault....It is just me.

    The other is I don't know how to delete it....So if someone knows please post or delete it...May Forrest knows how.

  14. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    I am not sure how to delete, but I feel you are making important choices to protect yourself from nocebo Kalo! Bravo!

    You might private message Jan, who has some controls on the back-end I believe. And/or Forest, but Forest may be too busy.
  15. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hi Kalo - as promised, I have reviewed your post and the thread, and the first thing I want to say (echoing Andy) is Bravo! to you for recognizing that you are prone to being influenced by the power of the nocebo effect.

    However - I am not going to delete your thread, because it's too valuable! The thing is, every lesson that we learn and share here on the forum is a lesson that can be shared with and learned by others. This is the entire reason for creating and curating a forum like this. I can guarantee you that Forest would not delete this thread, because he's the one who trained me :) He would, however, also be proud of you for reaching your ultimate conclusion. This is an important step for you, but you still have a long way to go.

    If you have spent any time reading posts by other members, you will realize that a ton of people start out asking for help, get side-tracked by veering off into the physical, and end up coming to a realization that they have to focus on the psychological. What you have experienced is quite common, and what we do here is illustrate the truth of the process in the stories that come up time and again.

    Another reason to not delete this thread (or any other legitimate thread like it) is because you received some really great responses - again, these can help others, and they are a big factor in the value of the thread.

    You've been around here, off and on, for quite a while, and it's hard to see that you are still struggling. As Andy pointed out, you give us many clues to indicate that what you are dealing with is unconscious repressed emotions - manifesting as yet another form of TMS symptoms.

    If you have spent any time reading Success Stories on the forum, you will find a TON of people describing tangible physiological conditions that turn out to be TMS and which went away. These include rashes, bumps, and, yes, noisy joints.

    You asked for some kind of response - so here you go: you clearly are bitter about the TMS doc who refused to review your scans, because you mention that twice. But let me ask you: why should he or she do so? A TMS doc is not a TMJ specialist. Presumably, you had the scans done and they were already reviewed by a TMJ specialist. I suspect that TMS docs are, in fact, trained to refuse to review scans. We all know that it's important for symptoms to be initially checked out by traditional specialists, but once that has been done, once you have been told "we can't find anything wrong", it is the job of the TMS doc to convince you to throw away your test results and concentrate on the psychological.

    Spending time and energy being angry with a TMS doc who is doing his or her job is a huge waste of your time and energy. As I recall, Kalo, you consistently spend a LOT of time being angry and bitter about other people. This is a symptom of deeper shit that you are STILL not accessing - and it's getting in your way.

    If you want to continue this discussion, feel free to start another thread (so you can leave the TMJ discussion here). My suggestion: spend as little time as possible on your symptoms. In fact, perhaps just say "symptoms" and leave it at that. Because when addressing TMS, the physical details are irrelevant. And you don't want to make the mistake of encouraging someone to trying giving you TMJ advice all over again, right?
    HattieNC likes this.

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