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Old 05-30-2003, 12:25 AM   #1
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Join Date: Feb 2003
Location: NY
Posts: 135
Stacie212 HB User
Post How TMJ ruined my life

I know this seems like a kind of depressing thing to do, but I'm just curious what things this TMJ has prevented you from doing and if treatment has helped you do more things without pain.

These are the things I have trouble/pain doing due to my TMJ and neck problems:

exercising (I have gained ~30 lbs due to inability to exercise)
eating even the softest food
talking, especially difficult to talk loudly
sitting for a long time
standing for a long time
playing piano
getting dressed
going out with friends
brushing my teeth
getting my teeth cleaned and cavities fixed
drinking from a straw

these are the symptoms I have:
displaced discs
inflammed joints
pain all over face, neck, shoulders, and back
swollen neck
bad posture
stomach problems
decreased hearing
ear pain
blurry vision and my vision deteriorates more and more
twitching of eyes sometimes
numbness/tingling in fingers and arm
chest pains - sometimes i feel like I'm going to have a heart attack
shortness of breath
nausea and vomiting
nosebleeds ocasionally
loss of smell
can't bend down, can't turn head
lack of concentration, even in things I used to love
lack of motivation
constant feeling that I'm tired even when I sleep a lot
lack of coordination and balance, always bumping into things

Thinking realistically, is there really a way I can get my life back and do the things I can't again? I'm 21 and I am just starting my life, but I feel that with so many things wrong and so many things I can't do and haven't been able to do for 6 years, how can I live and enjoy a normal life? Even if I get decent treatment now, is there a way to undo all the damage that is done? Or will I have to live like this for the rest of my life?? How will I be able to get married, have kids (just thinking of labor hurts), and have a career? I have asked the doctors these things, and they don't seem to have an answer for me.

Sorry for sounding so morbid.


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Old 05-30-2003, 01:41 AM   #2
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Cymy Sue HB User


There is always hope. All of these problems and symtoms can be treated.
The worst enemy when you're fighting the disabling aspects of any chronic ailment is "Depression".

Depression makes us feel hopeless and when we feel there is no hope, we can't see that there is help.

I think a lot of us have been through many of the things you've listed. You left off one symtom. After my first Sagittal Split and I was in such a mess, (I looked like the Elephant Man), my surgeon asked me to try and explain how bad the pain was. I couldn't talk so I wrote on my notepad "It hurts to blink my eyes".
He was speechless.

That was many years ago. I continued to make bad choices in treatment & surgeries. We didn't have access to the information that is available now.

I am much older than you now, but I've had TMJD most of my life. I've been down so low so many times.
When the mind feels defeated, it's so much harder to continue to seek help and get better.

If you're suffering depression, you need to get help for it. You have to be able to put everything you have into defeating the physical symtoms. You have to be in control to make the right decisions.

I know a Pep Talk may not be what you want to hear, but you need to be able to find the positives in your life. I've been in a "Hole of Negativety" several times, and it's not a place I like.

To answer your original question, when you're in the throes of TMJD, it does prevent you from doing most everything normal people do.

Proper treatment "CAN" and does work. This does not have to be your life. If what you're doing is not working, find another Doctor or Dentist. There are some out there that can help you.

TMJD tried to control my life for many years. When I found this board a few months ago, I could have written something very similiar to what you have written tonight. I was so tired of it all.

Reading this board and all the stories of other people, who were worse than me, and what everyone was doing to get help with their problems, gave me hope & encouragement.

With the right treatment, my hopes lifted and with a different attitude, I am now better than I have been in years. Many of the symtoms I had for years are gone. As far as the TMJD, my life is totally different.

Always have hope,
Cymy Sue

[This message has been edited by Cymy Sue (edited 05-30-2003).]

Old 05-30-2003, 07:09 AM   #3
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DianeTMJ HB User

Good morning Stacie-
Stacie, I wish I were there to give you support. All those things I have had, excluding the vomiting.

Many warm hugs to you Stacie

[This message has been edited by DianeTMJ (edited 10-30-2003).]

Old 05-30-2003, 08:12 PM   #4
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rhody HB Userrhody HB Userrhody HB User


I've wondered if some people might have more than just TMJ problems which could create your symptoms. I wondered if poisoning from dental amalgams (or possibly root canals) would cause this. I've written on the TMJ board before, as some may remember. I didn't have problems with TMJ, but I had these symptoms.

1) Headaches (intense after tooth broke and exposed the one mercury-silver dental amalgam filling)
2) Tingling of Hands (after tooth broke and exposed the one mercury-silver dental amalgam filling)
3) Urinary problems - nearly always had the sensation to go - no problems apparent after doctor visits
4) Muscle pains, near the joints - mostly on legs when trying to run
5) Chest pains, occasionally near the center. I could alleviate the pain by taking deep breaths and expanding the chest cage. Calcium pills helped too.
6) Lower back pain
7) Loose teeth
8) Gum disease
9) Unexplained skin rashes
10) Muscle pains on shoulder, neck, and upper back near shoulder blades

These are the ones I can remember off of the top of my head. You may not have any mercury-silver dental amalgams, but I write about it from time to time, in case I might help one person. Being sick is so fun. Sorry to hear about your troubles.

If you didn't have exposure to mercury, maybe other things could be causing you problems. For me to cure myself, I had to go outside traditional care. For within traditional care, they don't know enough about the toxicity of mercury from dental amalgams and from many other sources.

After being told to not run more than a hundred yards in 1978, I now run nearly 20 miles a week. Lately, I've been experimenting with cilantro with success. This week I pushed myself too hard, with additional exercise and my muscle complained some. So, I have to slow down. But, I've made a complete turn-around, since the days I cared to not to see another day. I've been there. So, I understand from that perspective.

It took me years and years of experimentation with diet, herbs, and toxins to finally figure it out. I hope that whatever you have, that you keep searching and that you don't give up hope.

For me, prayer helped too. I wouldn't give up, and I believed in the power of repetitive prayer, according to my beliefs. Finally something happened. It was a miracle of sorts, that my tooth broke and I got worse - pointing to what was causing me all these problems. It was one of my first significant clues. That was about 10 years ago.

Old 05-30-2003, 08:23 PM   #5
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User


Hang in there. With the 'right' treatment, it does get better, believe what Cymy Sue has said, it's true.


Old 05-31-2003, 03:50 AM   #6
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Location: NY
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Stacie212 HB User

Cymy Sue and Diane,
Thank you so much for your responses.
It's hard to have hope and be optimistic when the pain won't even go away for a second. But at least knowing that other people have improved means I have a good chance too. I know I need to attack all the problems I have at once. I can't even remember the last time I could stand up's been so many years. Even a hug hurts sometimes
I've never heard of a neuromuscualr dentist. How are they different than a regular TMJ dentist? I have been listening to music for the past few hours and it is nice to just relax.
"Do not let the TMJ take over your life. Do not let it control your life, you control it." I need to remind myself of that. It's my body after all. I'm in charge!!
Thanks a lot everyone. Have a good day

Old 05-31-2003, 04:02 AM   #7
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Stacie212 HB User

rhody, I'm glad to hear you improved!!

My TMJ and neck problems started after I had a car accident and then got hit in the head and had a concussion. So I have both neck and TMJ problems and each makes the other problem worse. I like the dentist that I have been going to the past few weeks but I have yet to find a good PT or chiro. I really want one. I'm at the point where I sooo just want someone to give me a massage. My mom gave me one a few days ago but she was too gentle because she's so scared to hurt me that it didn't do much. I was hanging out with this guy today and I almost asked him to give me a massage. I'm so desperate!! I was hinting at it like "oww my neck and back hurt" but being a guy he didn't get my hint. lol So I need to just find someone that I can trust and can finally help me get better. I have this spot on the upper part of my back right below the shoulder blade that has been hurting nonstop for over 6 years. I don't know what it is. Whenever I touch that spot I just want to scream it's so painful. It seems like more than a muscle spasm. any idea what it could be? Could it be something like scar tissue developped there? i never had an MRI on the top part of my back and that area. Maybe I should get one done. nonstop pain for 6 years in the same spot doesn't seem just like a spasm. It's different than the pain I have in other areas of my back.
ok, take care guys and thanks for all the help!!

Old 05-31-2003, 08:38 AM   #8
Join Date: Mar 2003
Location: Long Beach, CA, USA
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HRevero HB User

Things that only tmj could have helped me to realize:

Know matter what pain I am in, tomorrow will come

When my eyes twitch, people think I am flirting

My husband truly has shown me the man I dreamt about

Kissing may never look like in the movies, but they are passionate ones with meaning

Talking hurts, but this has shown me how to make my incredible LONG stories short

I was given the opprotunity to know who my real friends were

My laughs may hurt but thats how I know I had a good day

No matter what a person looks like on the outside they can have another life going on in the inside

If my mouth won't open this gives me a reason to use Sign Language

TMJ has shown me that I needed to slow down, and listen

I am reminded each day, what I am fighting for, so I have learned never to give up

But most of all TMJ has given me the ability to see how strong of a person I really am. I have tmj, but
I will never let it have me.


[This message has been edited by HRevero (edited 05-31-2003).]

Old 05-31-2003, 08:49 AM   #9
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DianeTMJ HB User

Thank you so much Heather -
That is just wonderful, would you mind if I printed that out? Especially the husband part, man I have to pinch myself everyday, he is so supportive and he is all that I dreamt about.
I hope you have a great day Heather, thank you, thank you!

Old 05-31-2003, 03:39 PM   #10
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User


That was really nice, and so up-lifting!


Old 06-01-2003, 02:54 AM   #11
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Cymy Sue HB User


Words of courage, encouragement, hope, and understanding are always needed here. You, as so many others are an asset to this Forum. (I'm glad to "know" you)

Cymy Sue

Old 06-02-2003, 09:16 AM   #12
Join Date: Mar 2003
Location: Long Beach, CA, USA
Posts: 369
HRevero HB User

This disorder has so many negatives to its name I wanted to look at the positives for a change. I am glad that it helped you.

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