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    Old 09-17-2016, 10:24 AM   #1
    RA1745
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    Crying & TMJ

    Does anyone else cry....like all the time?

    I feel like I've been put into a TMJ pit, and the opening is lined with doctors talking about their TMJ treatment belief, all talking over each other and not really listening to one another, yelling that their method is the best, or that another method is "poppycock," or "unproven," or "old-fashioned." Meanwhile, I'm there at the bottom, trying to get their attention, trying to be taken seriously, trying to get definitive answers, trying to make them hear each other out, to absolutely no avail. So I'm left there at the bottom of that pit, tired and anxious and scared of a future of chronic pain that could easily become a reality if I make the wrong decision.

    I've improved recently to be sure, but things are always worse in the mornings. It's like throughout the day things reset for me emotionally and I can distract myself. But as soon as I wake up, I remember everything that happened, the decisions I have to make, and how awful it is that people with TMJ are put into this position.

    So this morning I cried. A lot. I'm at the point now where I can go a few days or even a week without crying, but some mornings like today just overwhelm me too quickly. I called my mom to get some clarity and to have someone listen to me, and this helps a lot. But I selfishly wish that I knew someone with my level of TMJ just so that I could talk to someone who really UNDERSTANDS. That is why this board is so valuable to me right now. Everyone has different variations and severities of TMJ, but we all go through the he same AWFUL process in trying to find out the truth and the best treatments.

    My family does their best, but they can't understand the soul-sucking fear I experience when I think about trying to treat this. It's TOO easy to be mistreated. And there's no legal recourse for us if we ARE mis-treated or over-treated.

    So, no wonder I'm anxious and stressed and scared and crying a lot.

    I want to scream at all the doctors I see, WHAT WILL IT TAKE TO MAKE YOU WORK TOGETHER, TO SEE US AS HUMANS AND NOT A GIANT CHECK?!

    As of right now I am lucky, and I try to keep that in mind. This has all happened very suddenly for me, and I think that is most of why I have not gotten to the point of any emotional stability. Ever since the root canal that set this off almost 2 months ago, I have steadily improved and regained functionality, but my scans show that my condyles have been steadily degenerating for some time now, so it stands to reason that if I do nothing, they will only continue to do so. And because of the root canal, I now have an improperly done crown and displaced discs, which compounds the already existing condyle situation.

    My original oral opening after the root canal was quite low. It wasn't measured at the time, but it was just enough to get my toothbrush or a straw in and that was about it.

    I have improved with meds, compresses, and exercises to 38mm opening so far, which is great. It gives me hope that my discs are not completely locked without reduction.
    I am able to drive again, I am not bedridden anymore, I am able to chew soft foods (although it is awkward and uncomfortable and often causes some ear pain later), and on the surface I have achieved a relatively "normal" day to day life.

    I try to remind myself of these positive things, but I'm human, and sometimes I just can't help but be sad, and angry.

    But the underlying issues remain, particularly the threat of pain (particularly ear pain) if I overdo it, if I sleep in the wrong position, if I cry too hard or smile too hard, etc...

    So I'm left with semi-normality and the glaring reminder that if I do nothing, these current symptoms/issues will only increase over time. So each day I'm left thinking about what to do to prevent a pain-filled future.

    And so I cry. I wish I was stronger, I wish I could maintain a more positive outlook on things, but I've never been that person. I am at heart quite cynical unfortunately, and this situation has only increased that, particularly in regards to doctors. I'm trying to be better though.

    But this board does help me. At first it was overwhelming reading about how many people were in so much pain or getting worse because of wrong or irresponsible treatments. But the more you dig, the more success stories you find, and these are worth their weight in gold. And the advice from other people going through this is so valuable. Just knowing that you're not alone is SO VALUABLE.

    I'm just starting out with this. Any advice, any similar stories, any thoughts, any words of support, would be greatly appreciated.

    I wish everyone an easy day, and I hope something good happens to you.

    Thank you!

    Last edited by RA1745; 09-17-2016 at 10:28 AM.

     
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    Old 09-20-2016, 06:51 PM   #2
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    Re: Crying & TMJ

    I am so sorry that this has happened to you. I myself have lupus and fibromyalgia and I break down at least once a month. It took my eyes, my ability to have children, and my confidence with weight gain. Not to mention the chronic pain and fatigue. So I get it. I get being slammed with something you never saw coming.

    You are not alone.

    My mother was told she has TMJ but she has dentures. It makes me wonder. The whole side of her face hurts. Several docs have said different things from an infection, to TMJ to both. I need someone to answer me on how severe this pain gets because she is convinced she has a brain tumor. I will keep digging like you did.

    If you need anyone to talk to, I'm available.

     
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    Old 10-29-2016, 11:41 PM   #3
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    Re: Crying & TMJ

    The pain of tmj takes many forms I have been fighting it for over 5 years and $50000 they did my reconstruction wrong for got to increase vdo so I cry everyday in pain and frustration. Yes tmj can cause sever ear pain like your ear is exploding if your mom has dentures does she wear them to bed? My tmj was caused by a loss of vdo vertical dimension of occlusion if she does wear them to bed it she might need a new pair with increased height due to bone shrinking. Never let a dentist shave down your teeth never get a rear molar pulled tbey r essential for joint placement I have been through it all splints occlusion adjustment ortho reconstruction I have felt pain in ears head shoulders neck cheeks lips tongue it was and is hard to deal with and even harder if u lose hope like I did 1mm in height in your mouth can make a huge difference.

     
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    Old 10-31-2016, 05:42 PM   #4
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    Re: Crying & TMJ

    You are not alone. My TMJD presented with ear stuffiness, tinnitus and pain. It felt like an extremely bad infection 24/7 and took many months to even identify the problem. I would lay there many nights crying because the ear pain was so intense. Without distractions, the pain felt worse. It played havoc on my body because I wasn't getting enough or refreshing sleep. As my TMJ dentist said, my body was under a lot of stress from this. I ended up on muscle relaxers and sleep meds just to allow me some relief.

    I have an extremely high threshold for pain too. I've had chronic multiple joint surgeries and this pain is up there with the worst.

    With treatment, it can get better, but it is a very slow process. If you can find a PT who does oral and manual PT on the jaw and neck, it can provide some relief.

    By the time my TMJD was identified, I had lost 30% and 40% of my condyles respectively. The final trigger in my case was intubation before I know I had joint hypermobility issues.

    You can see my journey throughout my posts here...the good, bad, and frustrations. They start around 2008 though.
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    Old 11-03-2016, 11:23 AM   #5
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    Re: Crying & TMJ

    You are not alone. I'm just beginning with my splint. I've had it adjusted 2-3 times before it is even somewhat tolerable. My jaw was locking at first.
    Honestly, yesterday was a horrible day for me. I felt like a huge baby, but I really lost it and cried a lot which of course amplifies symptoms. The problem is my TMD symptoms seemed to subside for a few weeks, but now that I have the splint it makes me feel worse. It's hard to get through the 12 hr daily minumum. I can't wait to take it out! It makes my ears feel like they're on fire and my whole head just feels off. I realize everyone is different, but I can't help wondering how long is this going to take to not feel worse!?
    Good luck to everybody out there. Try to stay positive and visualize the relief from this.

    Last edited by mod85; 11-03-2016 at 10:23 PM.

     
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    Old 11-07-2016, 12:25 AM   #6
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    Re: Crying & TMJ

    I have had TMJ pain in the past for years. I am now 65 years old and I found out recently that I no longer have the pain. I think as you get older the muscles in your jaw become more flaccid. Do I know how you feel! It is a very irritating and distracting pain. I think you could somewhat say it was like putting a clothespin on your ear (which can be more painful than TMJ pain) but if you did that people would maybe understand how hard it is to get through life and your work when you have constant pain like this. I was put on methadone for maybe 10+ years for this pain.
    I just went through a 3 week withdrawal and found out I didn't have the pain anymore. Methadone is a good pain medicatiom because it doesn't give you that loopy feeling and it has a longer half life which means you have a more constant pain relief. The only negative part is when you withdraw from it you go through hell. I came very close to killing myself at one point because of severe restless legs and restless arms as well from withdrawal.
    I think TMJ pain is more difficult to deal with because it's on your face. I have had back and knee pain and could tolerate it much better. Another reason I think my pain went away was I had a tooth pulled that I was hitting on all the time the wrong way. The dentists always want to make your bite perfect which makes a lot of money for them but I don't think that it's always achievable.

    They will just say "OH well!" when your bite is perfect and you walk out of the office in pain and a lot poorer.

    Good luck to you. See if you can maybe get stronger pain meds for awhile so you could relax the jaw more and look up about exercises and massage. There is a TMJ book out that is quite good. It's called "The TMJ Healing plan" by a physical therapist named Cynthia Peterson.

    I wish you joy in the future.

     
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    Old 12-01-2016, 06:38 PM   #7
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    Re: Crying & TMJ

    Omg! This is me! I understand 10000% because I go through the same thing! Contact me we can chat about it whenever you want. I came here because I need the support. I talk to famybut they dont get it because they can't see it but we feel it. This horrible disorder has nearly ruined my entire life but I fight because I miss the old me so bad! I was funny, outgoing, life of the party and now I barely want to do anything but fix this, so I know! I think I can offer you so much advise on our condition and some self treatments! I have been researching this for almost a year now and have came to the same common conclusion on this tmj nightmare! I still cry and it's been 8 months. I cried last night, I'm tired, just very tired but if we want to live a better life we have to fight for the proper fix. Please contact me I'd love to share info.

     
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    Old 12-01-2016, 06:45 PM   #8
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    Re: Crying & TMJ

    Omg, these stories are scaring me. I'm in the process of getting my bite fixed because I lost Vdo too. This dr says he will open my bite a bit and add back what I need

    Last edited by Hopefulgurl1; 12-01-2016 at 06:47 PM.

     
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    Old 12-17-2016, 10:11 PM   #9
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    Re: Crying & TMJ

    Vhee0829, Please tell your mom that on the side her face hurts, to check and see if the denture teeth are a good shape and height compared to the other side. This is what tmjd is all about 95% of the time, the bite. Most people who suffer with this have a malocclusion. Also find out if she closes up more on one side, twitch face or mouth to one side, if so, this is the side that's affected and most likely have a vertical dimension issues, or maybe her dentures are not the right height compared to her natural vertical dimension (VDO)

    Last edited by Hopefulgurl1; 12-17-2016 at 10:12 PM.

     
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    Old 01-08-2017, 02:59 PM   #10
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    Re: Crying & TMJ

    Thank you all so much for the replies!!!
    I appreciate it so SO much.
    I hope for so many good things for all of you.

    I wish I was rich and could start a tmj research facility.
    I wish I had political influence and could spread the word about tmj and create strict regulations for tmj "specialists" and their treatments.
    I wish the people who DO tmj research would get off their asses and DO MORE.
    I wish greedy dentists as a breed would die out.
    I wish for so much, and yet to me it doesn't really seem like a lot. Why can't these things already be happening?

    I hate all of this but I am glad to have other people to vent to and to relate to.

    MountainReader, your posts always inspire me. I've read through all of them and I wish for your happy ending to be mine as well, and I'm so happy you're out of this mess.

    I'm considering seeing this doctor:
    Dr. Maryam Bakhtiyari in Manhattan Beach
    Has anyone been treated by her, know someone treated by her, or have any opinion on her based on her website or anything else they've heard?
    All opinions would be appreciated.

    Thank you again!!

     
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    Old 01-08-2017, 08:19 PM   #11
    Hopefulgurl1
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    Re: Crying & TMJ

    Quote:
    Originally Posted by RA1745 View Post
    Thank you all so much for the replies!!!
    I appreciate it so SO much.
    I hope for so many good things for all of you.

    I wish I was rich and could start a tmj research facility.
    I wish I had political influence and could spread the word about tmj and create strict regulations for tmj "specialists" and their treatments.
    I wish the people who DO tmj research would get off their asses and DO MORE.
    I wish greedy dentists as a breed would die out.
    I wish for so much, and yet to me it doesn't really seem like a lot. Why can't these things already be happening?

    I hate all of this but I am glad to have other people to vent to and to relate to.

    MountainReader, your posts always inspire me. I've read through all of them and I wish for your happy ending to be mine as well, and I'm so happy you're out of this mess.

    I'm considering seeing this doctor:
    Dr. Maryam Bakhtiyari in Manhattan Beach
    Has anyone been treated by her, know someone treated by her, or have any opinion on her based on her website or anything else they've heard?
    All opinions would be appreciated.

    Thank you again!!
    Wow you sound just like me exactly! All the things you wish for so do I. I think it's we all are stuck in an era where tmjd is not fully understood which scares the crap out of me. I hope this is not the case, please don't let it be the case. I hate this too. It sucks the life out of you and these drs don't realize how they are ruining people lives by telling them they can fix them and don't or make them worse. Something has got to give. Where is manhattan beach?

     
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    Old 01-08-2017, 08:21 PM   #12
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    Re: Crying & TMJ

    Quote:
    Originally Posted by RA1745 View Post
    Thank you all so much for the replies!!!
    I appreciate it so SO much.
    I hope for so many good things for all of you.

    I wish I was rich and could start a tmj research facility.
    I wish I had political influence and could spread the word about tmj and create strict regulations for tmj "specialists" and their treatments.
    I wish the people who DO tmj research would get off their asses and DO MORE.
    I wish greedy dentists as a breed would die out.
    I wish for so much, and yet to me it doesn't really seem like a lot. Why can't these things already be happening?

    I hate all of this but I am glad to have other people to vent to and to relate to.

    MountainReader, your posts always inspire me. I've read through all of them and I wish for your happy ending to be mine as well, and I'm so happy you're out of this mess.

    I'm considering seeing this doctor:
    Dr. Maryam Bakhtiyari in Manhattan Beach
    Has anyone been treated by her, know someone treated by her, or have any opinion on her based on her website or anything else they've heard?
    All opinions would be appreciated.

    Thank you again!!
    Wow you sound just like me exactly! All the things you wish for so do I. I think that we all are stuck in an era where tmjd is not fully understood and they don't know how to treat it which scares the crap out of me. I hope this is not the case, please don't let it be the case. I hate this too. It sucks the life out of you and these drs don't realize how they are ruining people lives by telling them they can fix them and don't or make them worse. Something has got to give. Where is manhattan beach?

     
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    Old 01-11-2017, 08:58 PM   #13
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    Re: Crying & TMJ

    Manhattan Beach is in California.

    I know that our situations are not the only outcome. I have read positive outcomes and happy endings on this website in fact. People come to this website when they're at their worst and seeking guidance because they can't find it elsewhere, or seeking someone to relate to.

    An important thing to keep in mind is that online stories of tmj are often the worst of the worst. This is where people go to vent and find solutions when other things are not working or they are feeling worse. There's no Happy Endings tmj board because when people aren't in pain, they want to live their lives. And if they were in an insane amount of pain and are now recovering/feeling better, they want to avoid reminded themselves about what has happened to them. So not a ton of people come back to post on this board when they feel better.

    I know I personally avoided it for a little while because I developed anxiety that was attached to this board. I would obsessively research and read story after story, and for a while it did its purpose and I learned a lot, but eventually it became an unintentional self-harm kind of thing. I would get on this website and within 2 minutes start crying hysterically. I've gotten better about it now and I limit my contact with it, but it definitely made me understand why someone would avoid this website if they were feeling better.

    So it's important to not get sucked too deeply into these boards. Get advice, ask for help and opinions, but don't let them prevent you from seeking treatment or make you think it's entirely hopeless.

    These boards are important, never doubt that, but also remember that there are many success stories out there. I've spoken to quite a few people who are doing much better now with some form of treatment or another. It's not impossible. Is it frustrating and challenging and scary? Heck yes. But not impossible. Xoxo

     
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    Old 01-11-2017, 09:23 PM   #14
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    Re: Crying & TMJ

    Quote:
    Originally Posted by RA1745 View Post
    Manhattan Beach is in California.

    I know that our situations are not the only outcome. I have read positive outcomes and happy endings on this website in fact. People come to this website when they're at their worst and seeking guidance because they can't find it elsewhere, or seeking someone to relate to.

    An important thing to keep in mind is that online stories of tmj are often the worst of the worst. This is where people go to vent and find solutions when other things are not working or they are feeling worse. There's no Happy Endings tmj board because when people aren't in pain, they want to live their lives. And if they were in an insane amount of pain and are now recovering/feeling better, they want to avoid reminded themselves about what has happened to them. So not a ton of people come back to post on this board when they feel better.

    I know I personally avoided it for a little while because I developed anxiety that was attached to this board. I would obsessively research and read story after story, and for a while it did its purpose and I learned a lot, but eventually it became an unintentional self-harm kind of thing. I would get on this website and within 2 minutes start crying hysterically. I've gotten better about it now and I limit my contact with it, but it definitely made me understand why someone would avoid this website if they were feeling better.

    So it's important to not get sucked too deeply into these boards. Get advice, ask for help and opinions, but don't let them prevent you from seeking treatment or make you think it's entirely hopeless.

    These boards are important, never doubt that, but also remember that there are many success stories out there. I've spoken to quite a few people who are doing much better now with some form of treatment or another. It's not impossible. Is it frustrating and challenging and scary? Heck yes. But not impossible. Xoxo
    You are sooooo right! Makes plenty of sense. I've just recently gotten better with my crying. It was affecting my vision I cried so much. I wish people would come back to help us but I understand I guess. And I too have gotten not only obsessed with searching here and reading for help, empathy and confidence but it does hurt to do it often. We just are so desperate for a fix and to get on with life. I just told a friend that if I had eight years in me I'd go to dental school just to help tmj people or if I had plenty of money I'd have a huge center with only all devoted tmj specialists and dental artists only the very skilled. They could make their money but their work HAS to work....tmj drs, organizations take heed here please. I know it's possible thankfully I at least feel that but where are you my tmj savior!? and don't cost a fortune please!
    I wonder why drs don't come here if they care so much. Is it against the rules? They should be here offering help, guidance and knowledgeable support instead of us having to figure it all out. This is a pretty big, known forum with plenty of Tmj sufferers. Well we got each other for now and thank you for your words of encouragement.

     
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    Old 01-11-2017, 09:29 PM   #15
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    Re: Crying & TMJ

    RA1745,
    Oh and I didn't know manhattan beach was in CA LOL. You know a lot of Tmj things come out of CA like the well know dr Philip and the gnathology principle and also bioesthetic dentistry, maybe even biomimetic dentistry so it's crazy even you are having a hard time finding someone good or is it that they are far away?

    Last edited by Hopefulgurl1; 01-11-2017 at 09:31 PM.

     
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