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Sorry for the long post but desperate!!

Discussion in 'Support Subforum' started by Kez, Feb 21, 2015.

  1. Kez

    Kez New Member

    Hi everyone, I have been reading the TMS Wiki for a couple of months now. I hope you guys can help me.
    I had a car accident 13 years ago and about a month after starting having Jaw ache. Since then I have had 4 MRI's, loads of dentists appointments, x rays etc and a million doctors appointments. I was diagnosed with Myofascial pain, TMJ disorder. I had pain on my left side for 12 years. I have to be honest I kind of got used to the pain and was virtually pain free when I was pregnant. I have always had pain on my left side (which clicks and grates) but then after my second child (almost four years old now and very demanding) I developed pain on my right side. The pain started just before a family holiday?
    I had a CT scan about a year ago as was convinced my jaw bones were breaking down (I know a bit extreme) Anyway, I had a Harley street Doctor look at it (known as the best doctors in the UK) and he came up with £10000 treatment programme. He didn't however tell me there was any real problem with my jaw joints. I then went to a Maxilla facial Doctor at my local hospital. He told me my jaw joints looked fine and that my brain was doing this. This is when I started looking into TMS, I am still not convinced and part of me wants to go back to the hospital. The problem is the clicking and grating in my left side...im am now on the lookout to see if my right side is clicking aswell. Im convinced it sometimes does which makes me wonder how it can be TMS and not structural??? Surely if its TMS it wouldnt click and grate? Also the pain will swop sides often (is this a sign that it is TMS?) I ordered "unlearn your pain" book last year and I have to say I could relate to to a lot of it. I have the typical personality traits. I also have the other TMS symptoms like IBS, irritable bladder, anxiety issues etc. This has been since I was a little girl. I started the book and i have to be honest I did feel a bit better, and on one family day out I actually made the pain go away???? I was in pain in the morning and by the time I usually feel hopeless I actually felt better. Then I ate some biltong (like beef jerky) and It all the pain came back which made me think that it was structural. Since then I havent been able to pick up the book again. Also I always seem to be good over Christmas (I love Christmas) and then January comes and I feel terrible again. Once again, im sorry for the long post but Im feeling very down about this, im anxious and having very dark thoughts. The only time I feel better is when I sit down and have a couple of glasses of wine (i know this could lead to a dangerous path because I shouldn't drink to make the pain go away) but if im honest its turning into a habit and scaring me. I just want to be the best mother, wife etc Thank you all for listening. I have been on many "health boards" etc. and I have to say you guys are the most positive!! It gives some sort of hope. Thanks again x
  2. North Star

    North Star Beloved Grand Eagle

    Oh Kez….I know I have a few years on you so here's a Mama Bear {hug}. (Hope you don't mind a hug from a stranger. ;) )

    So much of your story echoes my history. I struggled with TMJ issues for YEARS and also had an oral surgeon quote me an eye-popping price on surgery and orthodontics. My jaw sounded like a castanet in a mariachi band some days. (Fun party trick! ;) ) And you know what? It's allllllll faded away. Nothing. Not a pop. Nor an ache. (Cue to back pain to enter stage.)

    First, you really lucked out with a doc telling you the pain was coming from your brain. You, my dear, have had a TMS diagnosis offered to you on a silver platter. (Okay, it came via a radiology report but who's noticing?)

    Look at your correlation to the pain onset with what's going on in your world. My "car accident pain" started nearly a year after the car accident. What really started it was my sister dying.

    My TMS really kicked into high gear with panic attacks and fibromyalgia when I was a young mom. I had 3 kids under 3 and my oldest had special needs. (Autism spectrum among other things.) My desire - like your's - to be the best wife and mother is another key ingredient in the wicked soup that is called TMS.

    A few practical words of advice: Stay the heck away from other health boards. (Sounds like you've already discovered this.) They are bad for your health. It's funny, I was part of a forum on FB that revolved around chronic pain. When I started learning about TMS, I dropped out but I am still Facebook friends with the moderator. She is so full of TMS it isn't even funny. Only with her, she has her fingers in her ears and is screaming, "la, la, la, I can't' HEAR you!"when it comes to accepting anything outside of being a victim. Not throwing rocks at her, mind you. Been there myself. My point is, a person has to be ready for healing and I IMHO, I think most health forums are just a place to bitch and commiserate. Those that want healing usually move on.

    I highly recommend getting Steve Ozanich's book - The Great Pain Deception. Also, I have Healing Back Pain on audio and I listen to it at night when pain wakes me up. Dr. Sarno himself reads it - I got it on Audible. Love, love, love having this gentle soul speaking health into my pain.

    And finally, hang out here. As you've already observed, this is a loving community of very special people. By the way, the drop in chat is today. The info is at the top of the screen on the forum main page. There's really great people there that you can chat with in real time. I know the time difference might be a stretch though.

    Hey, regarding the wine. Enjoy your glass or two. If it gets to be an issue…stop. I do the very same thing and decided fear of becoming an alcoholic was not going to steal my pleasure and the benefit of a relaxing glass. (I come from a long line of alcoholics.)

    Hope this helps, Kez!
    Lizzy, David88 and Ellen like this.
  3. Ellen

    Ellen Beloved Grand Eagle

    Great post, @North Star ! Full of compassion, good advice, and humor--your special brew.....beerbuds
    North Star likes this.
  4. North Star

    North Star Beloved Grand Eagle

    Aw, shucks, Ellen….thanks! You're a sweetie. :)
  5. David88

    David88 Well known member

    I would just add to North Star's wonderful post, stop trying to be the best wife and mother, and be a good wife and mother (which I'm sure you are!). The impossible expectations we put on ourselves to excel are one of the sources of TMS. We get angry inside when we feel pressure to do too much.

    TMS can be a long journey. Be patient and compassionate with yourself.

    Lizzy and Ellen like this.
  6. Kez

    Kez New Member

    Aaah Thanks guys so much. North Star...you gave me tingles!! Honestly its a very lonely world I live in and always feel that nobody really understands (I guess they dont) And you just made me feel so much better. I have read all the books, I have Steve's books and the wonderful Walt's book on my kindle. When im feeling down, I will often read through them. The problem I am having is actually starting the exercises. I guess I am scared that it is not going to work. I have had the "unlearn your pain" book sitting next to my bedside table since November. I am just so worried it is not going to work. Does anyone else feel this way? I am anxious as this is my last hope and what happens if it doesnt work? (I know my typical TMS personality is on show here) but its honestly how I feel. Thank you so much to everyone who has commented on my thread. It means alot x
    Ps You are totally right about the "healthboards" scary place and no help at all. xx
  7. David88

    David88 Well known member

    Hi Kez,
    I understand that it's scary to get started on a TMS program.

    I became stuck at one point in the recovery process. I had gone as far as I could on my own with the books. I started to think about consulting one of the TMS physicians in the directory on this site. Then I dithered and delayed for two months before actually making the phone call.

    When I finally talked to him, and told him about my dithering, he said (very insightfully, I thought) that it was another TMS equivalent. Fretting about a decision holds your attention the same way pain does.

    The other part of this is, you have TMS because of feelings inside you that are scary, that you are blocking out. To begin a TMS recovery program is to decide to face those feelings. Of course that's scary.

    Be compassionate to yourself. Begin the program when you feel ready. Take it at a speed that you're comfortable with. Look for support here, and from people in your life that you can trust. Sometimes help is found in unlikely places.

    Kez and Ellen like this.
  8. North Star

    North Star Beloved Grand Eagle

  9. jju88

    jju88 New Member

    Hello Kez, I am new myself so hoping we can give each other a boost. I struggled and still do struggle with TMJ issues. I have spent a lot of time and money to try to fix the issue, including splints and therapy. MRI was all clear. This kind of got me on the path to thinking it was mental, along with a fibromyalgia diagnosis that does not make sense since I can move around and everything.

    Anyways, like you I am afraid to begin the SEP because if this does not work there is not much else to try and I already feel very alone. I will say when I talked about my feelings with my (almost) girlfriend I felt much, much better. Letting things out is difficult but the more I think the more I am confident that we both are dealing with TMS and can wipe away our pain with following the treatment.
  10. rabbit

    rabbit Peer Supporter

    I'm just starting out on a TMS recovery program, and really believe in it wholeheartedly. Still in pain, but I know this is the right thing for me. Long history of migrating ailments. My only posts so far have been questions, and seeking support, but something struck me about your post - if I read correctly, the pain went away when you were pregnant and raising a child that required a lot of attention. It sounds like your brain HAD to be focused on other things and couldn't distract you with other stuff. Just a thought. I also dealt with TMJ issues some time ago, went to quack docs, wasted a ton of money and it was awful. Still, interestingly, when I'm anxious, the side of my face gets numb, which is something that happened when I was having all sorts of adjustments to crazy custom mouth devices that were useless. It was awful. Anyway, I ended up having such a bad experience and more pain and fear "treating" the TMJ that I eventually followed my gut, went to my regular dentist, got a plain old plastic molded night guard, and basically have been fine. Now, it migrated to my back and leg, but having distance from the TMJ I wanted to provide what I hope will be helpful. Hang in there!
  11. audrey

    audrey New Member

    Dear Kez,
    I've read this sight for a while now and recieved great help with back problems.
    Now a jaw issue I hoped had resolved itself is slowly returning. So I thought I'd try searching for TMJ to see if there was anyone here who had experienced this horrid problem. I don't know any one who has and I keep it to myself as I've actually had people laugh when I explain this thinking its funny. It's not is it!

    Briefly, it began 12 years ago, clicking in my left jaw joint. I now live with a very restricted opening and can just manage to put food in my mouth which is cut up so small in the hope of not creating the horrible sensation. I too was sent to a Maxilla unit here in Glasgow. After explaining it was due to teeth grinding they wanted to operate and I was terrified as it sounded awful. I read the Robert Upgaard book which I thought helpful and he strongly advised against any surgery. I also had a splint made .... which was a nightmare as they couldn't get the impression implement into my mouth.
    They put me on a soft diet and I think it helped.
    I've lived on relatively happily for 10 years now with restriction but I coped with it ( the worst thing is going to the dentist!) However, I feel and fear it returning. My jaw has started clicking and grinding if I open my mouth quickly or without watching it. So again I'm chopping food up....I just hate feeling the click. I have no pain though.

    I never thought this was TMS as there IS no pain just horrible clicking and an occasional moment of terror as it has stuck shut.
    I think I came onto this site earlier in the hope there would be something about TMJ, in a place I trust, and needed a bit of encouragement to accept a TMS diagnosis.

    I see you wrote this in Feb, how are you now.

    Audrey x

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