Chronic Pain

My TMJ seems to have calmed down some over the last few months but I definitely have to agree that there is a lack of understanding as to how the jaw and muscles in the surrounding area function. After all, it was a dentist who put me in this situation. It definitely is uncharted waters when it comes to our jaws, treatments, etc.

My gripes, oh boy....
I agree with everything posted here. My biggest gripes:
1. Why aren't all joints treated, researched and covered financially in a universal fashion???
2. The pain that is constant, nagging and then turns excruciating and unbearable without any warning.
3. The change this has had on my life - including the effort it takes me to find my positive frame of reference and enjoyment of life!
4. I am tired of soft foods! I miss eating normally, chewing gum, blowing bubbles, being pain-free, medication-free, etc...
Tink*

Okay, Stacy; you asked for it! My biggest complaint varies from day to day or, certainly, from year to year! The worst thing is that, onse you've had surgery, there is no cure.
But, and it's a big but, TODAY, my biggest complaint is nowing that I am scheduled to have my metal joints removed (both of them) and have NO idea as to how I'll function without jaw-joints in the interum (before the pt-scpecific joints are ready to be seated). I'm upset, frustrated, and terified about the propostion! Anne

Addendum; I guess what I'm saying, Stacy, is that there arre very few answers. And, like others have already said, there has been such a lack of research in this area! This simply is not right, with SO many people out here suffering. This frustrates me!

Hi Anne,
Thanks for your reply! Will you have your joints wired shut while you wait for the custom joints to be made?
I found that the 8-10 weeks while I was wired and waiting for my custom joints was actually quite easy - after you get over the surgical pain and swelling, things are pretty smooth from there.
I could talk very well (ask here - plenty of people talked to me and couldn't believe that I was wired shut!), managed to eat enough, and had a lot less pain than normal.
I hope you find the above to be true as well. When do you have your joints taken out?

FYI, I found the second surgery to be more difficult than the first since my body was exhausted from the first anesthesia/hospital stay, and I was just weak in general.
Hope this helps and let me know if you have any more questions!
Sincerely,
Stacy

Hey, Stacy;
Thanks for the reply. Acutally, this is the third time I'm having my joints replaced but will be the first time when I'll have to wait for my "new" joints to be fabricated (since I already have Christensen stock-joints). The reason I'm so freaked out is that, with each removal, there has been more and more bone-loss. And, I've had these ill-fitting joints in (well, sort of in) the joint spaces for 13 years. I hope it'll be as smooth as yours, for sure, but have a lot of worries about it!
Anyway, I did want to say that I wasn't completely honest about y biggest complaint/rant about TMD: My biggest problem is the lack of intamacy, lack of relationship, sex, and especially, KISSING! The last time a guy, who I've liked a lot for years, tried to kiss me, it was so completely painful that I never did call him back for more.
So, that's it: I want to be able to KISS without the pain!! ANd, then, if this works, I want SEX!!!
Anyone else?
Anne

Wow, it's been a long time since I logged in here, I've missed you all...and I'd like to now add what I HATE about TMJ disorder!

I personally can't stand that people often think TMJD is entirely caused by stress. This is NOT necessarily the case! I know that in my case, and for many others, the symptoms started after extensive dental procedures (i.e. difficult wisdom teeth extractions). Yes, the symptoms can be compounded by stress...and I happened to be going through a VERY unusually stressful time after my dental work...BUT, I firmly believe my TMJ disorder NEVER would have started without that difficult (and unnecessary) dental procedure.

I say this because I never had ANY symptoms of TMJD in my life before the forceful tooth extractions...no headaches, no jaw clicking, restricted opening, NADA! And I had plenty of stress through my childhood and adolescence, early 20's, etc...significant stress!!! But again, I NEVER had any discomfort in my jaw throughout those numerous periods of prolonged stress.

I'm sorry to go on ranting here...but i do think that lay people AND-most importantly-dental professionals need to be aware that long, traumatic dental procedures can initiate TMJD in some people. Dental professionals need to ask themselves if these procedures are TRULY necessary! In my case, looking back, I think my wisdom teeth extractions were completely unnecessary, and just a way to line the oral surgeon's pockets. Of course, hindsight is always 20/20...but I have definitely learned my lesson!!!

Hey, Mag. You're absolutely right! A lot of cases of TMD are started with difficult extractions and/or orthodontia. In fact, I believe, with the overall increase in "braces" since i was a kid, and the increase in TMD (even or especially the "lesser"cases), there's definitely a corrolation. Now, I don't mean to say that some TMD is worse than others... I realise that it really hurts at ANY point; I am talking about non-surgical cases as relating to orthodontia and the standard removal of wisdom teeth.
It's certainly not all in your head (stress-related) but, for most people, stress does make it worse.
I hope you're doing better!

My biggest complaint having suffered from tmj for nearly 20 years is the lack of understanding from doctors about this condition. Yes, it is chronic and yes it is disableing. What will it take for a doctor to take this condition seriously and administer the proper medication for the pain?
I went through all of the TMJ dental treatments as a young teen, everything besides the invasive surgery and for many years it went untreated after that.
Now as an adult I suffer from TMJ disorder, which I just found out was the source of my overall discomfort.
Finally all of the neckaches, headaches, shoulder aches and arm pain finally make sense.
I have been told by many doctors that "nothing is wrong with me" to the whole "lifestyle change speech". NSAID's give me horrible stomach upset but yet that is what they continue to try to prescribe me. I am to the point of daily depression from the pain.
Anyways, there it is my biggest complaint about this disorder is the lack of sympathy doctors seem to display in regard to this near unbareable condition.
what ever happened to patient rights to proper pain treatment? And yes I frequent chiros, acupuncturists and physical therapists. All are just temporary fixes
Sorry for the rant, just had to get it off my chest.
Thanks for listening

This message has been edited. Last edited by: usf_bull,

Anne,

Yeah, I do also wonder what role orthodontics might play. I never had any problems during my orthodontic treatment...but I did have braces from age 15-17.

And to the last poster, amen!! I couldn't agree more. I also have another chronic pain condition, due to a defective metal rod being placed in my leg at age 14. Let me tell you, I have been through a LOT of pain from that. But even after all the injuries I have sustained from that, the doctors just don't seem to understand how I could still be in pain. I think that in general, doctors just don't understand chronic pain. Especially if it pertains to injuries that appear to have "healed." TMJ is just one more chronic pain condition they don't understand. So it's not just TMJ...it's chronic pain in general that they need to work on understanding.

By the way, there was a recent article in Newsweek about chronic pain...it was the cover article. Did any of you see that? I believe it was the June 7th issue. Interesting article...

Bull and Mag.
Yep. It did take me some time to have myself declared "disabled", primarily due to the tjm stuff. In fact, my major diagnosis is: "severe, chronic, intractable pain syndrome secondary to TMJ D&D". Of course, we (the docs) have added to this: Lumbar-sacro degerative disc disease and stynosis, thoracic scoliosis, thoracic outlet syndrome, servicalayia (just got this one today), etc...
So, yeah, I do get it. I have had a few doctors ask, in the 15 YEARS since I've been on SocSec Disability, just what my problem is! HA! Well, it all started with a huge MVA in 1988; I ended up with a fully-loaded Pepsi truck on top of my car.. yeesh!
So, yeah; and, when I have ANY doc ask me this kind of bull, I don't go back to see him or her!

I am getting my MRI results back today since last having been diagnosed with TMJ in 1986.
So it will be interesting what the report says.
Back when I was diagnosed with the condition, my jaw did all the popping, clicking, getting stuck open and shut etc. along with alot of jaw pain.
Now 21 years later I have no more joint pain, Just grinding, scraping sounds. ButI have been suffering with unexplained neck, headaches, shoulder pain, shifted shoulders, muscle spasms in my eyes and a constant high pitch ringing in my right ear for about 8 years. So I will be a good case study for all who have had this condition for a long period of time.
I will keep you posted.
what is all new to me is this TMJ disorder or syndrome they call it. Its almost like the misssing link to all my pain and suffering has been found.
There may be someone who may be interested in what 21 years of tmj look like on a mri. ill let you know.
thx
robin

I would be most interested in your MRI results. I have had TMJ for probably 10 years or more. I sound a lot like you history wise, except I just had some brief acute jaw pain (probably when my disc displaced) then no more until I started treating for TMJ.

Well here it is the results of decades TMJ damage.
There were a lot of medical terms I had to look up and the Dr. explained as well it reads as:

*within the condylar fossa there is sclerosis and osteophyte formation along its anterior/superior surface constistant with osteoartritis. The meniscus apperars to be completely anteriorly and laterally displaced.

With opening the meniscus remains partially anteriorly displaced with a small degree of recapture of the meniscus by the condylar head along the posterior and aspect of the meniscus. There is also persisant lateral displacement.

So basically the doctor who is a pain doctor, that i had been referred to by another doctor who said "nothing was wrong with me" when i had complained of neck pain and headaches, said that i had bone spurs in my jaw, which i guess is what a "osteophyte formation" is and is the source of all my chronic agony and all the classic symptoms of the disorder.
He referred me to the best tmj doctor in our area and finally for the first time i understand why i feel the way i do.
now the question is what next?
we shall see, all i know is that i wish i would of known the seriousness of this condition many years ago so it wouldn't of gotten to this point.
so anyone who is reading this and is in the first stage of tmj.....take care of it now! find a good doctor who will help you get a good attack plan to help deal with it before its to late.
hope this helps someone.

Thanks so much for your post. How nice to have some validation that your symptoms are real. Its not all in your head! I do hope that your treatment path is viable and successful for you! Please keep us posted.