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Old 07-24-2009, 05:29 AM   #1
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Fellowship Thread



I figured it was high time we had a thread to chat in, whine in, and/or cry in. I personally prefer not to start a new thread every time I feel like just complaining or need an ear. We know our loved ones around us probably need a break from us talking about TMJ 24/7. At least mine do. Perhaps we can come to this thread for reassurance of our crazy symptoms...or simply because we just need to vent.

I hope this thread serves as some useful purpose to you as you go through your journey (however long it may be) in dealing with TMJ disorders.

 
Old 07-24-2009, 05:38 AM   #2
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Re: Fellowship Thread

I guess I'll make the first post.

As long as I can keep my mouthpiece from falling out during the night, I have been feeling pretty decent. It will be a while b4 I can afford my $3K mouthpiece, so I am dealing with it the best I can. In looking back over the year (since all my symptoms began) it seems as though this TMJ disorder has invaded my every waking moment and thought. I feel like this problem is as much a part of me as breathing is. Perhaps I need to make the decision to just live with it like it is *supposed* to be there, since it obviously won't go away on its own....to keep going, moving on with my life, and to stop obsessing with something that won't kill me. Yes, I think that *obsession* is the right word. People live with chronic pain all the time, but I don't want to look back at my life ten years from now and realize that TMJ has ruled over everything. Now that I think about it, 10 years from now my children will be graduating high school. I don't want their childhood memories to be about mom obsessing with her jaw.

Being positive is the key.

 
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Old 07-24-2009, 06:46 AM   #3
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Re: Fellowship Thread

Quote:
Originally Posted by madnmas View Post
I guess I'll make the first post.

As long as I can keep my mouthpiece from falling out during the night, I have been feeling pretty decent. It will be a while b4 I can afford my $3K mouthpiece, so I am dealing with it the best I can. In looking back over the year (since all my symptoms began) it seems as though this TMJ disorder has invaded my every waking moment and thought. I feel like this problem is as much a part of me as breathing is. Perhaps I need to make the decision to just live with it like it is *supposed* to be there, since it obviously won't go away on its own....to keep going, moving on with my life, and to stop obsessing with something that won't kill me. Yes, I think that *obsession* is the right word. People live with chronic pain all the time, but I don't want to look back at my life ten years from now and realize that TMJ has ruled over everything. Now that I think about it, 10 years from now my children will be graduating high school. I don't want their childhood memories to be about mom obsessing with her jaw.

Being positive is the key.
Ok--I'll be the 2nd one to vent..I too have little kids, and I feel sometimes I'm the worst mom in the world. I cant' play soccer with them anymore, I can't play catch, I'm pretty much like an 80yr. old right now. At least that's what it feels like. Every muscle in my back, neck , and head are in some form of spasm, 24/7. I hate splint therapy, I think it should be used in the army for a tool possibly in interrogation tactics? What do you guys think? Maybe when we catch terrorists, we can slap one of those suckers in their mouths and let them chew on that for a while. Just a thought. I still have faith that my new doctor has the knowledge to fix me. If I didn't , I would have given up by now. When I hear my kids laughing, or playing that's a big reminder that I have to keep plowing through this journey, even though it feels like an episode of the Twilight Zone, possibly titled, "Neverending nightmare, Woman and her repositional splint.." take care all!! J.

 
Old 07-24-2009, 02:56 PM   #4
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Re: Fellowship Thread

Great idea. I love it! I'll definitely play along. Warning...none of this will make any sense!

I got my splints on June 17. I had a cranio sacral treatment yesterday, and I'm being told that everything seems better without the splint. Argh!!!! What?!!! I have been faithfully wearing both the night time and day time splints 24/7, have not noticed any changes (still going through the same old pain/spasm cycles), and now I hear that it might not be working at all, but making things more stressed?! Is it possible that tmj is not the issue? I saw the xrays, and I know that there is a tmj issue, but is it possible that there is another cause? I keep thinking of my appt with the neuro in Sept for dystonia testing, and how desperate I am to not have to go for that appt... And of course, my dentist is on holidays for another week or so, so I can't get into him to have the splints adjusted (the night time one needs an adjustment, it is starting to bind when I take it out). The CST yesterday pointed out that my spine pulls to make a curve - like a "C" - from my head to my hip. I've been aware of that, but her take on that is "emotional stress". Ok, I'll give her that, it has been a stressful week or so, but is it true that "emotional stress" from your childhood or current life can cause such debilitating physical issues now? I have no respect for people who say "Oh my life is horrible because of the way my dad treated me". I think that it is bull to put all your problems (whatever that may entail - drinking, abusive behaviour, or tmj issues) of today on the shoulders of people from your past. My theory is grow up, deal with it, and learn how to be a respectful adult! Geez, take responsibility for your life. Decide who is good in your life, and get rid of the rest. (Whew!, deep breath) So anyway she gave a referral for a psychologist. More money going out the window. Not ready to make that step yet! Can't afford to at this point.

I feel like I'm spinning around in circles, and can't decide - or don't know - what to do next. I'm tired of going to a chiro and feeling like a Mack truck ran over me, I chose a Massage Therapist/CST who was extremely hard to get into, so had to search for someone else for CST, losing time in the process. I went to the mentioned massage therapist's chiro colleague, and felt like she was totally taking over the treatment, felt like I was being led in a direction that I wasn't comfortable with (and didn't appreciate since I respect my dentist's treatment plan more than hers). I'm tempted to forget chiro totally, but I know that in a few days I going to go crazy from the feeling of needing to be adjusted. The CST from yesterday was great, and the treatment was awesome, but again there is that pull "Deal with your emotional stuff". How many times do you have to "deal with it" and talk it over and over before it becomes an issue just by the mere continuous dealing? At some point can you just not let it go? I just want to scream and pull my hair out!

And, of course, all the hopping from chiro/massage therapist to another is costing money, because I don't feel any benefits from the treatments. If I was starting to notice improvements, I wouldn't feel so frustrated.

 
Old 07-24-2009, 03:11 PM   #5
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Re: Fellowship Thread

clari- don't you think that going to all those doctors is insane? I am so tired of being REFERRED!!!!!!

I'm curious as to how many of you have been referred to go to someone and then based on your personal decision, you opted out. MY TMJ specialist wants me to go get a sleep study done (as part of his diagnosis/treatment plan) even though I do not have one single sleeping problem!!! The only reason he wants me to go is b/c I have a really small airway. I am normally a very cooperative patient, but I truly want to refuse to go. It makes no sense to get this done if I am not exhibiting one single sign of a sleep disorder. I just don't know how he can expect to help me if I don't obey his orders. grrrrrrrr

 
Old 07-24-2009, 04:45 PM   #6
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Re: Fellowship Thread

Quote:
Originally Posted by madnmas View Post
clari- don't you think that going to all those doctors is insane? I am so tired of being REFERRED!!!!!!

I'm curious as to how many of you have been referred to go to someone and then based on your personal decision, you opted out. MY TMJ specialist wants me to go get a sleep study done (as part of his diagnosis/treatment plan) even though I do not have one single sleeping problem!!! The only reason he wants me to go is b/c I have a really small airway. I am normally a very cooperative patient, but I truly want to refuse to go. It makes no sense to get this done if I am not exhibiting one single sign of a sleep disorder. I just don't know how he can expect to help me if I don't obey his orders. grrrrrrrr
My doctor has his own sleep clinic (with tmj treatment) and he just had a questionaire about sleep apnea, and the symptoms. It was a check off list, and if you had like 7 or more symptoms, he probably would suggest that you have the sleep study. Honestly, if you are going through splint therapy, and having a splint bring your jaw down and forward like it's supposed to, your airway will be better off anyways. At least that's my understanding of it. People that have all the bad spasms and forward head posture absolutely need PT, Chiro, and massotherapy along with cranial sacral therapy to get fully well. What is horrendous is our healthcare system looks at these alternative therapies as "wholistic" and many ins. co's will not even cover a dime for these extrememly important and effective ways to treat tmjd. This is outrageous, it needs to be changed. ok --i'll get off my soapbox...

 
Old 07-26-2009, 07:21 AM   #7
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Re: Fellowship Thread

After my outburst , I have decided that I am going to take some control! My mom's voice kept saying "What are you going to do about this?". Psychological counselling is not a financial option right now. So, I'm going to try meditation and yoga. Any other suggestions would be wonderful!

 
Old 07-26-2009, 11:42 AM   #8
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Re: Fellowship Thread

clari-

Am I an idiot for not wanting to get a sleep study done when I have no symptoms WHATSOEVER of having a disorder? I mean, it's not like this is a blood test and I can't be sure...this seems like a black and white issue. I just don't know how to face my dr. with making the decision not to go through with it.

 
Old 07-26-2009, 12:38 PM   #9
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Re: Fellowship Thread

Hi madnmas! I can understand your hesitations, for sure. And no, you are not an idiot!!!!, no matter what you choose. This is your health care - your body, and you have the complete right to have control of it!

Is the sleep study included in your treatment price, or do you have to pay extra (always thinking money first, I am!)? If it is included, I say go for it. It may or may not show something, but at least there wouldn't be a doubt in your mind ("oh, maybe I should have had the test...") If it isn't included in the price and you have to pay extra, then I would be thinking twice too!

I know on my initial paperwork, it included questions about sleep (tmj and sleep issues are very closely connected), there is a scale the dentists will use to determine if you might need to have it evaluated. Did you fill in any paperwork with questions related to sleep? Maybe there was an answer or two that indicates that some of your issues might be sleep related. If you can't breath properly, maybe you are clenching causing tmj issues. Maybe clenching at night is causing you to choke and wake up often. Maybe something is causing you not to fall into the deep REM sleep we all need to get a "good night's sleep". If you haven't been sleeping well for a long time you may not remember what it is like to sleep well, but still think that you are sleeping well.

Has the dr. fully explained his reasons for wanting you to have a sleep study? If he hasn't, ask him again, (and again and again if you have to) until you are fully 100% comfortable with the testing. If he is a good doctor he will understand your need to have all the information before making a decision.

Keep in touch! Let us know what you decide!!

 
Old 07-26-2009, 05:20 PM   #10
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Re: Fellowship Thread

it is not included in the price, actually...but I have insurance so it will cover 80%.

here's the deal- the ONLY reason he wants to do it is simply b/c my CAT scan showed my airway is smaller than normal. Am I abnormal? No. My passageway was just born that way..LOL

As far as the sleep study quiz- I do not have one single answer of yes to ANY of it!!!!!

Here 's the clencher to me saying no- I have high amounts of anxiety in regards to clinical type settings. My BP will sure to soar into the high 150's/90...ONLY when I am under great amounts of stress, I wake up gasping for air....any other time..NO. So here I am going to a sleep study that will surely stress me out causing me to sleep weird and exhibit signs of sleep apnea...but any other time I have no trouble sleeping, gasping, breathing, snoring, being tired, etc, etc, etc. This is just a test to order simply based on my airway. Can people have small airways and sleep fine? Yeah. But b/c of my small passageway he wants to make sure.

The quiz is made for a reason and I do not have one single symptom.
grrrrrr

Last edited by madnmas; 07-26-2009 at 05:21 PM.

 
Old 08-07-2009, 05:14 AM   #11
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Wink Re: Fellowship Thread

How is everyone doing? Any news, not so news?

I had an adjustment done (some of the higher bumps on the day splint were smoothed out some) the other day, and I must say that it seemed to make things worse. Right back into the pain and spasms again. I was having a not too bad day (to me that means not feeling like I'm ready to scream from the pain and pressure, so maybe a 6-7 pain) up until the ride home from the dentist. Still today (only a hour into the day) it really hasn't let up. Woke up uncomfortable in my neck and shoulder...

Does it ever get any better? Has anyone seen any improvements? I'm at week 7.5. I have seen some slight improvements...my eye isn't twitching anymore, but other than that I would say there is no significant improvements.

I have to confirm my Sept neuro appt in a week or so. I guess I'm going to have to go after all. I was hoping for a miraculous improvement, "yes! this fixed all my physcial problems". Pretty frustrating that I'm not even close yet.

Good news, I've still been able to get some canning done, and that feels great knowing that I won't have to buy as much fruit/tomatoes etc. during the winter. I hate buying pre-canned fruit for the kids lunches, never really know what is in it. Anything to save a buck!

 
Old 08-07-2009, 07:39 AM   #12
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Re: Fellowship Thread

Quote:
Originally Posted by bassclari View Post
How is everyone doing? Any news, not so news?

I had an adjustment done (some of the higher bumps on the day splint were smoothed out some) the other day, and I must say that it seemed to make things worse. Right back into the pain and spasms again. I was having a not too bad day (to me that means not feeling like I'm ready to scream from the pain and pressure, so maybe a 6-7 pain) up until the ride home from the dentist. Still today (only a hour into the day) it really hasn't let up. Woke up uncomfortable in my neck and shoulder...

Does it ever get any better? Has anyone seen any improvements? I'm at week 7.5. I have seen some slight improvements...my eye isn't twitching anymore, but other than that I would say there is no significant improvements.

I have to confirm my Sept neuro appt in a week or so. I guess I'm going to have to go after all. I was hoping for a miraculous improvement, "yes! this fixed all my physcial problems". Pretty frustrating that I'm not even close yet.

Good news, I've still been able to get some canning done, and that feels great knowing that I won't have to buy as much fruit/tomatoes etc. during the winter. I hate buying pre-canned fruit for the kids lunches, never really know what is in it. Anything to save a buck!
HI--Oh my gosh when I read your post it is exactly how my life is going this week. I had my first adjustment on MOn., and my doctor took a little bumpiness away on the splint because he said my jaw wanted to come a bit further forward, so he gave me I guess more room to be positioned forward, if that makes any sense. He said my jaw doesn't need to be permanently "stuck" in those grooves for 4 mo., if he sees that it wants to come a tad bit more forward, that's what the adjustments do. I questioned him in great detail about this because I thought the whole idea behind a repositional splint was to "hold" your jaw firmly into that given position. I'm scared about his decision, because my spasms greatly increased after his adjustment, and have not let up. I have 20yrs. behind me of tmj, and a severe car accident "whiplash" so he said he thinks any adjustments might put me in a whirlwind of spasm for a temporary time limit. He wants me to start massage therapy asap. I'm trying to be mentally strong about the whole thing, but it's very hard. Especially since my kids start school soon, and all that madness that follows. I'm going to be a wreck if this doesn't let up. My next appt. is in Sept. as well. I wish us both luck, and hopefully it will get better soon.

 
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