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TMJ sufferer would like some insight please!

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Old 01-28-2006, 09:54 PM   #1
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AussieV HB User
TMJ sufferer would like some insight please!

Hi All,

I, myself, am a sufferer of TMJ (1.5 years now), and have tried various things to cure my disorder but have been seldom successful to date.

Something that pops up as a question for me is always:

I read constantly about experiences and TMJ ďpainĒ. Iím really confused as to this because I myself donít actually feel physical pain (unless I forced my jaw to open its full amount). My jaw simply does not function in the way that it used to prior to my TMJ (in that I cannot bring the bottom jaw forward to bite my nails anymore, cannot open my jaw as wide, and I cannot pronounce certain letters in words properly because my jaw is not as mobile anymore).

I would like to know is this the same thing? Is this what other sufferers mean by pain because Iím confused on that note.

I would to know what you're all experiencing when it comes to movement with your jaw, ie, difficulty speaking, and things I had mentioned above. For all of us, TMJ commenced in so many different ways but I just want to find out what kind of mobility you all have and what it feels like for you??

Hope to hear from you.
Thank you.
From AussieV

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Old 01-29-2006, 08:57 AM   #2
Join Date: Jul 2005
Posts: 63
Re: TMJ sufferer would like some insight please!

Welcome and be glad you do not suffer from the physical pain that many of us do. I also have functional problems that you describe, I cannot open as wide as I used to. Before having open joint surgery I could only open 10mm, which is about one finger width. Now I can open about 2 fingers width, which is a big gain for me. But I suffer from a tremendous amount of physical pain all day long. I take alot of narcotic pain medication and muscle relaxers to try and keep my pain to a manageable level. My bite is not what it used to be and I cannot touch on one side since my surgery. Eating can be a challenge due to this and the opening issue and of course the pain.

I think with TMJ, people's experiences can be widely varied. There are people with functional issues like yourself without much pain, there are people who have alot of pain without alot of functional issues and everything in between. TMJ can present in many different ways with many different symptoms. That is why it is so important to see an experienced dentist so that you can get appropriate treatment for your specific problem. There is no one solution fits everyone solution to fixing TMJ problems. Any dentist who takes that approach is doing a big disservice to his patients. Before any treatment is commenced, some type of imaging must be done and a full assessment of the individuals situation should be done so that the treatment for that person is appropriate.

I hope that helps to answer your question. I hope others will be by to offer their insight.


Old 01-29-2006, 09:40 PM   #3
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Re: TMJ sufferer would like some insight please!

Hi Va-gal, (sorry my reply is long)
Thanks so much for replying!! This is my first time making contact with other TMJ sufferers on forums and its very interesting reading about all the different situations - and like you said every situation is very individual and you have to find what treatment works to ease things and hopefully cure it forever....!

I have had it for 1.5 yrs now and I feel like its been a lifetime. From the moment I wake up I know its there, to the moment I lay down to sleep.........I hate it and I cant remember what I use to be like when this damn thing wasn't around!

Anyway getting back our discussion.....
I cringe at the thought of being in so much pain like a lot of you experience... It makes me very sad to hear how bad TMJ can be... I mean how do ppl actually live life normally with such pain? Do you work Va-gal? How do you make a living?
I'm a receptionist and I have to talk all day and every day, smile etc etc! and its such a struggle when noone at work knows what Im going through and I try to be as happy and normal as can be....

Va-gal I really feel for your situation it really saddens me to hear what you have been through and still battling. Do you have some better days and then some really bad days where you can barely open your mouth to eat/talk? Have you seen progress in your situation as time has gone by with different treatments? or is your situation pretty much constantly the same every day?

I think youre absolutely right Va-gal when it comes to seeing a good dentist or TMJ specialist and having everything assessed so that you know the severity of your case. Keeping the body straight and aligned is important I've been told various times! I must say with my mobility problem (without much pain) I did go to accupuncture about 2 months ago and I had relief of TMJ for 5 weeks after only having 3-4 sessions (best time Ive had in the 1.5yrs suffering)! I'm going back to accupuncture this week (i had to stop due to other expenses Ive had) anyway so for those of you who have mainly mobility & tension problems when it comes to speech try accupuncture, its worth a go!
I couldnt actually still bring my jaw forward to bite my nails (as I use to) when I had 5 weeks of relief but I had no tension in my jaw whatsoever, I could pronounce works my 's' and 'r' words without any jolts! it was fantastic. I couldnt open my mouth as wide but I wasnt worried about that part....just feeling no tension and feeling nice smooth movement in my jaw during speech was perfect for me! I could live this way - so Im starting again this week and see how I go.

I keep saying to my boyfriend I wish there was 1 place you could go to, you walk in with TMJ and they do some miracle quick and easy work and you walk out TMJ free for life!

I can keep dreaming but reality sticks out in my mind and that is to fight this thing to the end.. There just has to be something out there for all of us.

Thanks for your reply I really appreciate it.
Hope to hear from you soon.
Wave from AussieV

Old 01-29-2006, 10:01 PM   #4
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Re: TMJ sufferer would like some insight please!

Hi AussieV,

I know exactly what you mean about the work situation. I have been trying to tell my employers about my TMJ problem. They dont exactly understand it either. I've been doing data entry for the past year so as not to talk much. They are trying to have me do phones, but I really cant. Have you ever thought about doing something different? How is your opening..I think I might have about 12mm.. really bad.. I will see a tmj specialist soon. I woke up one morning with my jaw off tract, clicking etc..then it dislocated..and so has been the case for 6 mos. now. Its really wierd, I feel like its been a lifetime also!!

Old 01-29-2006, 10:52 PM   #5
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Re: TMJ sufferer would like some insight please!

Dear Laskalady,
Its so true noone at my work knows what I am going through because noone here knows what TMJ is!! Before I got it...I have no idea what it was! never thought there was such a thing as a jaw disorder!!

Its hard because you want to seem like youre normal just like everyone else at work and just get on with things without a worry...
Thats a good idea moving into a data entry role. I have thought of moving positions, I answer about 200+ telephone calls a day so its quite busy here. I will definitely look into moving somewhere in the back office so I dont have to speak as much.

Your opening is small and you need to get out there and see a specialist soon! My opening is almost about 3 fingers in my mouth but thats with some struggle to keep it open that much. Definitely 2.5 fingers. I use to open a lot more.
Its not so much that Im worried about the opening I think over time as the tension settles through accupuncture & other treatments my opening should come back a little... well Im crossing my fingers anyway!!

Sounds to me you did some heavy grinding that night if you woke up with such a bad jaw.. If youre a grinder a splint (as we call them in Australia) will be required, everyone will tell you that. As for my situation I was never a grinder mine started in a different circumstance.
When your jaw dislocated what did you do? Imagining what that would feel like sends shivers down my spine

You've got to go and see someone early and take it step by step. I keep reading ppl living with TMJ for most of or all of their lives...doesnt mean thats going to happen to everyone. You've got to try all avenues and keeping relaxed is going to help to an extent! I know as hard as it seems but relaxation is important! You cant turn back time, none of us can, we have to accept what we have and then get out there and try different treatments.

At the beginning I was such a nervous wreck, I cried so much and I knew that wasnt getting me anywhere! I just kept adding to the tension in my jaw. Now because of all the stress I have knots in my back and neck and I just cant stress about it like I use to otherwise other parts of the body slowly give in!

Write back soon.
Yours truely

Old 01-29-2006, 11:16 PM   #6
Join Date: Jan 2006
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HarlemWorld HB User
Re: TMJ sufferer would like some insight please!

I envy you for not feeling as much pain:P

Ive been having TMJ only for a short time, about 5 months, but its absolutely driving me nuts, I am a student and I find it virtually impossible to study with that slow, aganozing dull pain from day to to day which takes ALL my focus off my work and onto the pain..ive tried medication..T3, Ibuprofen, Extra strength advil, Benedol..none of it seems to do anything At all except maybe a 5 minute window where I cant feel anything in my mouth..some have suggested coedine, and percalets, but those knock you right out to sleep and I need to stay awake for all this studying...

I use some temporary relief that I find helps me for a little while, even its a short 15 minutes..I usually keep a heat pad across the entire left side of my face and shoulder since thats where the pain is most consistent, it helps loosen up alot of my face muscles, i also found that when drinking a hot cup of tea, i usually keep the hot tea in the side of my mouth thats most in pain for a little while, it seems to cause less pain in my mouth...

But I totally feel with you guys! TMJ is a pain...literally!

Old 01-30-2006, 01:02 AM   #7
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Re: TMJ sufferer would like some insight please!

Dear Momma Hope,
Thats fantastic you have found relief from all the discomfort due to using a magnetic pillow. I havent tried one however my boyfriend has mentioned it to me in the past. I have done a search and I can purchase it from various places in Australia on the internet. Do you actually need one specifically made for you or can you just order one and theyre all pretty much universal for all people to use?

Did you have similar symptoms of TMJ like me? the smooth rolling of certain letters in words is difficult and a very tense feeling in the jaw and cheek area?

Pls reply when you can.
Cheers from Aussie girl

Old 01-30-2006, 01:18 AM   #8
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Re: TMJ sufferer would like some insight please!

Dear HarlemWorld,
When do your pains occur? is this when you eat something or when you talk a lot?
That's sounds so tough I'm so sympathetic to you and everyone else here.

I have tried hot and cold packs also, seems like this advice is given all over the world. I think a combination of things has to be incorporated, hot and cold packs, magnesium vitamins (which help with tension), back and neck massages, posture, accupuncture (which needles are placed in the various pressure points into the jaw), a splint (if you grind), teeth straightening so that your bit is proper, osteopath visits for realigning the body - ALL of these I have tried so far and although Im not getting any worse - I have had some results with accupuncture as I have mentioned in one of my posts above.

Even though I am not worsening I'm still not happy with where I am. I want freedom in speech and I want to be able to smile like I did for 27 years of my life!

From Aussie V

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