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roxygirl577 Posted - 11/12/2008 : 12:33:17
I'm starting to doubt, and that's the last thing I want to do, but I'm so frustrated. I'm hoping someone can help me, please.

I have constant neck and jaw pain for the last 4 years, I'm 23. Every doctor, chirp, dentist, even the top oral surgeon at UCLA has informed me that it is due to my form of TMJ (my disc is entirely displaced causing a chronic lock with no chance of it gettgin better...I'm able to open my mouth between 5-8 mm) They're all telling me that my pain will be there forever because of my jaw...please I want to put all my thoughts into tms but this tmj is different than just the normal popping and clicking...it's so much more severe so I'm scared that mine is different...that it's not because of tms...

please help, has anyone else gone through this??? please, i'm giving up on my will to live.
17   L A T E S T    R E P L I E S    (Newest First)
roxygirl577 Posted - 11/19/2008 : 16:08:40
Well basically we talked for about an hour about my past and all the issues I've faced in my life, also my personality and my obsessions and phobias. We also talked about past medical things I've had wrong and how they could have also been tms. He did a basic check on me (blood pressure, neck and throat, and also my tender points). Afterward he was still not convinced that i had tms because he said I seem so well composed...especially when i was talking about my issues in life. He said I was so controlled. That's when i broke down crying and told him that I wanted to be the strong one, because that's been my role in life, and i just cried and couldn't stop. I think just the whole combination he could understand that i had tms.

He recommended me getting dr. sarno's lecture on tape and start journaling, and to call him anytime. So I am not going to go into this trying as hard as I can...I'm going to take it one day at a time =]
LuvtoSew Posted - 11/19/2008 : 05:49:40
I guess I'm wondering what he based his dx. on. I'm glad to hear he thinks your symptoms are from tension tho. What is his plan for treatment? Did he recommend psychological treatment or journaling?
pandamonium Posted - 11/19/2008 : 03:45:16
That's great news Roxygirl.
I know that when my diagnosis was "official" it made a big difference to me so hopefully it will help you on your way to recovery.
roxygirl577 Posted - 11/18/2008 : 22:13:06
wow, thank you so much everyone!! everyone's replies and stories have helped me so much! I am so happy that I found this board for support, I really needed it. =]

I saw my tms doctor yesterday (Dr. Strom, Seattle). The appt went very well, but he did not want to be impulsive and diagnose me with tms right that day so he told me he would sleep on it and get back to me in the morning. So first thing this morning he called me and said he believes I have a full blown case of tms and I've probably have had it for a very long time, which i completely agree with him. So I am very happy and relieved to hear this. I believed I did already but it's nice to have a diagnoses and now i can go from here and start my road to recovery =]

Thank you all so much, I am very thankful to have found this board and such wonderful people.
Pd245 Posted - 11/17/2008 : 15:17:45
My "tmj" comes from tight neck muscles. The tight neck muscles come from TMS. I've seen so many tmj doctors who treated my jaw by having me do years of physiotherapy, prescription pills, jaw exercises - all to no avail. I finally figured out that when my right scm and other neck muscles became tight, the jaw muscles soon followed and clicking began. The last jaw doctor I ever saw was happily charging hundreds of dollars to "balance my jaw." After weeks of treatments I came in and told him that it had to be that my neck muscles were the real problem. He sheepishly agreed and I've never seen another jaw doctor since.
Peg Posted - 11/17/2008 : 09:01:10
Well said ness!!!!

I had tmj type pain way back when I had my neck muscle spasm. Had the clicking too. I totally agree, it's due to muscle tension. All went away with Dr. Sarno's theory (working at it--applying it).

The change in focus from physical to psychological (Facing The Fire), the reduction of fear, the returning to activities, returning to life, returning to joy, returning to laughter, returning to feeling. Learning to take care of myself.

With all due respect, Do Not believe what the Doctors have told you. There is hope.

Best of luck on your visit with the TMS MD.

Peg




In questions of science, the authority of a thousand is not worth the humble reasoning of a single individual. Galileo Galilei
ness Posted - 11/17/2008 : 04:29:03
Hi

This is my first post on this forum. I felt so compelled to reply as I used to have TMJ pain. Dentists told me very scary things would happen to my jaw if I did not have treatments. (One of these treatments included widening the roof of my mouth and inserting teeth - oh my god!) I first noticed the clicking of TMJ when I was 15, I am now in my 30's. I decided to not do anything about TMJ (as all the treatments were so scary and none of them were proven to work) and for a while it got worse. THen, after a while of trying to ignore it, the pain wasn't so bad and eventually I was just left with a tight jaw, and occasional clicking.

Long story short, I progressed to having 'plantar fasciitis' and then after a physio hyperextended my knees, 'Complex Regional Pain Syndrome'. It was while I was having acupuncture for pain syndrome that I noticed that after one of the sessions my jaw felt looser. I believe that the acupuncture had treated the muscle tightness which, in my opinion is what TMJ disorder really is. As such, it is another TMS problem. Yes, TMJ can alter the alignment of the jaw, but this is because of the muscles being so tight for so long - classic TMS symptoms. (A GP had reccommended 'The MIndbody Prescription' to me after I had been diagnosed with Complex Regional Pain Syndrome'. She said that 1 of her other patients with something similar to me had used it to recover after years of pain.) I used the book to help me recover from CRPS - I'm nearly there!

So what I am really saying is, don't be scared of TMJ. If you massage around your shoulder, neck and jaw you will feel how tight your muscles are. This is because of TMS. Yes, if you have acupuncture or trigger point therapy it will probably help for a while. When the muscles 'release' a bit your jaw fuction will improve - mine did. But most importantly, for long term relief, do the Psychological work NOW, before your body throws worse and worse things at you to distract you like mine did. Start thinking psychological and stop letting the physical symptoms distract you. I hope this at least stops you being so scared of TMJ. If I can recover from it, you can.
roxygirl577 Posted - 11/13/2008 : 22:16:25
thank you so much everyone for helping me...I feel so much better and I know I have a journey ahead of me but I am excited to be on the road to recovery. =]

and thank you johnaccardi for your inspiring words, I will definitely remember to breathe whenever I feel anxious.

I will let you all know how my appt with Dr. Strom goes, I am looking forward to it =]
Wavy Soul Posted - 11/13/2008 : 16:07:00
look up my posts on my alleged TMJ that was really TMS

good luck

Love is the answer, whatever the question
HilaryN Posted - 11/13/2008 : 04:30:56
quote:
I just saw some doctors and they said the pain is related

btw doctors (and patients) don't like unexplained pain, and they don't know about TMS because it's not part of their medical training so they will blame the pain on the most likely physical culprit.

Sarno talks about this somewhere - e.g. doctors saying that pain is due to an abnormality in the spine... but the abnormality is actually in the wrong place (wrong side of the body) to cause the pain in the location where it is occurring.

Don't let the doctors / pain control your life. Take control yourself.

I'm all for going to a doctor if they can do something about the pain or condition, but in this case it's over to you.

You've already proved that the TMS approach can work for you. Don't be scared if the pain has got worse again. That can happen during recovery - recovery is not a straightforward process but can have ups and downs. Just keep on at it.

Hilary N
mcone Posted - 11/12/2008 : 22:15:49
quote:
Originally posted by roxygirl577

that's because I was trying to keep hope, and hoping that my neck pain wasn't related to my tmj...but I just saw some doctors and they said the pain is related and it will be there



If I could assemble EVERYTHING all my doctors told me over the past two years - all the physiological theories, models, explanations, treatment concepts, etc. and put it into a single pile - I would have one very, very, very large pile of SH_T (figuratively speaking).

I'm still struggling a bit myself, but I'm beginning to think that to *whatever* extent these soft-tissue pain syndromes do involve physical phenomenon or effects, it is the mind and brain that do indeed control the genetic switches or other cellular signals that govern how the body deals with the physical abnormalities (which indeed we all have). This may be why one person with "bad discs" or whatnot experiences serious physical "injury" symptoms, while another with the very same physical abnormality may not have any pain or functional limitations at all.
johnaccardi Posted - 11/12/2008 : 21:39:05
roxygirl577, First I just want to say I would bet that your problem is TMS and not TMJ. I would guess to say that you are simply seeing a very intense form of TMS. Your mind needed more than one distraction, it needs pain, it needs a form of hypocondriasis, it needs disabling fear, and possibly depression.

You sound like me, 6 months ago. I thought my condition was permanent and my doctor told me it looked like the permanent disease I feared so much, Sjogren's syndrome. I lived like a zombie for months. I thought of the way I would kill myself all day everyday. But as Tom Hanks says in the movie Castaway, "You just have to keep breathing, because tomorrow the sun will rise, and you never know what the tide will bring in." I'm doing great now, I know it's TMS.

I'm sure that you indeed have TMS and when you genuinly know that you will be doing much better, but you have to just keep breathing through the tough times...even if that's all you can do. Make sure to get back to us on how that TMS appointment goes.
roxygirl577 Posted - 11/12/2008 : 15:30:01
I made an appt with a tms doctor in seattle...Dr.Strom

I'm feeling a lot better that I can see him, thank you so much =]
mala Posted - 11/12/2008 : 15:16:33
quote:
I want to put all my thoughts into tms but this tmj is different than just the normal popping and clicking...it's so much more severe so I'm scared that mine is different...that it's not because of tms...


I am so sorry for you. Is there any way you could see a TMS doctor? I think that it would be a good idea to get some validation that what you have is indeed TMS. The sooner you do this the better.

In the meantime do take care. I think what Hilary says about taking some painkillers to make yourself as comfortable as possible is a very good idea.

Good Luck & Good Health
Mala
roxygirl577 Posted - 11/12/2008 : 14:37:02
please, i know i said my jaw didnt have pain, and it has been betetr, its my neck that hurts so bad and i didnt think it was related to the tmj until now, the dentsit and doctor told me and i left crying and if anyone has this please helpe me..i dont want to live, i want to die if this will stay, please help me, plaease,
roxygirl577 Posted - 11/12/2008 : 14:20:27
that's because I was trying to keep hope, and hoping that my neck pain wasn't related to my tmj...but I just saw some doctors and they said the pain is related and it will be there
HilaryN Posted - 11/12/2008 : 14:15:21
roxy,

In your previous posts you said you didn't have pain associated with the TMJ?

Have another read through your posts yourself if you can. Reading through them makes me sure that you can defeat the pain.

But don't be afraid to take painkillers in the short term if it helps. Pain can sap all our energy and sometimes it's necessary to take them in order to give us the mental energy and determination to do the TMS work.

All the best,

Hilary N

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