Maximos
01-19-2009, 06:34 PM
Hello to all!
I am 16 - I guess I was unfortunate enough to be graced with this condition this early, for some reason beyond me.
Last January, I woke up from a nap one time not being able to open my mouth - my jaw was completely locked. I was able to loosen it with ice and such, and thought nothing of it. Fast forward to Valentine's day, my birthday. I wake up and it is also completely locked. I schedule an appt at the dentist, go in, and get a custom mouth guard done for usage at night. It doesn't get better - in fact, fast forward to around July, and the condition that I thought was a minor nuisance grew to encompass all of the following:
+ Back pain (sometimes feels like a herniated disk in my upper back, sometimes just a very deep pain in my lower back when I lay down)
+ Neck pain, when I move it around, it 'thuds' at the base
+ Popping shoulders when I lay down and move my arms
+ My wrists are painful and crack a lot
+ I seem to have "jagged muscle movements" - in my back, arms, etc.
+ I have a problem with my right leg - at the knee and at the ankle - pain, 'roughness'
+ Odd diaphragm 'sliding' randomly with deep breaths
+ My jaw basically slides around uselessly in my mouth on the right side, cracks on the left side - when I open my mouth and close it, the right side 'hangs' on the way down
I promptly stopped using the guard when my neck and shoulders began getting worse. Had I not went to the dentist, I don't think I would be complaining of all of these things to you today... a big mistake indeed.
My hands tremble a lot. I have noticed some tinnitus developing in my ears.
Starting for two months in the beginning of the summer, I started eating better and lifting weights, running, playing sports, and such - I lost a very healthy 10 pounds that I am unable to regain. I would have continued if my symptoms had not begun to get worse...
I've been to an orthopedic and my family doctor. Both say nothing is wrong with me and everything is just "A OK". If only they felt what I feel!
I just don't know what to do. As we approach Valentine's Day again, it will mark one year since waking up with my jaws glued together. I shudder at the thought of what condition I will be in this time next year if I don't do something SOON. I have considered a NMD, but am afraid of the costs (my insurance won't cover it) and would be, quite frankly, mad if it doesn't help. Don't tell me a chiropractor would help either - I have read that they make things worse, just as what happened with the dentist and his nightmare mouth guard. I also don't want to hear of 'therapeutic help' - I believe my condition has gone much farther than can be helped by a passive approach.
Please help me...
[Please do not use cuss/slang words. Saying "mad if it doesn't help" is better. Thanks - Well-come Moderator.]
I am 16 - I guess I was unfortunate enough to be graced with this condition this early, for some reason beyond me.
Last January, I woke up from a nap one time not being able to open my mouth - my jaw was completely locked. I was able to loosen it with ice and such, and thought nothing of it. Fast forward to Valentine's day, my birthday. I wake up and it is also completely locked. I schedule an appt at the dentist, go in, and get a custom mouth guard done for usage at night. It doesn't get better - in fact, fast forward to around July, and the condition that I thought was a minor nuisance grew to encompass all of the following:
+ Back pain (sometimes feels like a herniated disk in my upper back, sometimes just a very deep pain in my lower back when I lay down)
+ Neck pain, when I move it around, it 'thuds' at the base
+ Popping shoulders when I lay down and move my arms
+ My wrists are painful and crack a lot
+ I seem to have "jagged muscle movements" - in my back, arms, etc.
+ I have a problem with my right leg - at the knee and at the ankle - pain, 'roughness'
+ Odd diaphragm 'sliding' randomly with deep breaths
+ My jaw basically slides around uselessly in my mouth on the right side, cracks on the left side - when I open my mouth and close it, the right side 'hangs' on the way down
I promptly stopped using the guard when my neck and shoulders began getting worse. Had I not went to the dentist, I don't think I would be complaining of all of these things to you today... a big mistake indeed.
My hands tremble a lot. I have noticed some tinnitus developing in my ears.
Starting for two months in the beginning of the summer, I started eating better and lifting weights, running, playing sports, and such - I lost a very healthy 10 pounds that I am unable to regain. I would have continued if my symptoms had not begun to get worse...
I've been to an orthopedic and my family doctor. Both say nothing is wrong with me and everything is just "A OK". If only they felt what I feel!
I just don't know what to do. As we approach Valentine's Day again, it will mark one year since waking up with my jaws glued together. I shudder at the thought of what condition I will be in this time next year if I don't do something SOON. I have considered a NMD, but am afraid of the costs (my insurance won't cover it) and would be, quite frankly, mad if it doesn't help. Don't tell me a chiropractor would help either - I have read that they make things worse, just as what happened with the dentist and his nightmare mouth guard. I also don't want to hear of 'therapeutic help' - I believe my condition has gone much farther than can be helped by a passive approach.
Please help me...
[Please do not use cuss/slang words. Saying "mad if it doesn't help" is better. Thanks - Well-come Moderator.]
Sponsor
Thelma-Louise
01-19-2009, 09:42 PM
Have you had any tests which support your drs and orthopedists diagnosis that nothing is wrong? If not, you may need to get some tests done to deteremine if there is a physiological abnormality causing this ( displaced or bulging cervical or spinal disc, piched nerve, issue with the tm joints or condyle, etc) or if its muscular. Request either an MRI, CT scan, tomogram, or ICAT of the mandible and maxilla in the open and closed postions and an MRI of the c-spine (neck) and spine. For good measure I had a brain MRI done to check for neuromusuclar diseases or conditons as well. The results of your tests may help point you in the right direction in terms of what type of dr and treatment may be right for you.
Maximos
01-19-2009, 09:56 PM
Yes, I had an MRI and x-rays done of my shoulders and neck, they looked fine, but certainly don't feel fine...
I will go to the oral surgeon soon and get his opinion.
I will go to the oral surgeon soon and get his opinion.
StillHope
01-20-2009, 09:18 AM
I completely agree with TL that for the start you need to know the state of your TMJ. An MRI and/or CAT Scan would tell a lot.
It does seem like there might be a problem with your disk, probably on one side. Did you ever wear braces? Did you have any back teeth crowned or extracted? I know you are young but some dentists do those things nevertheless.
All your symptoms can be well explained by a problem with TMJ or with your bite. Let us know when you get the tests done. Do not do anything irreversible on your teeth since things can easily get worse. Be skeptical as you are, it's very good, and be very careful with doctors and dentists. They like to do what they know how to do not always when this is really needed.
Meanwhile try to have your body relaxed and keep a good posture!
It does seem like there might be a problem with your disk, probably on one side. Did you ever wear braces? Did you have any back teeth crowned or extracted? I know you are young but some dentists do those things nevertheless.
All your symptoms can be well explained by a problem with TMJ or with your bite. Let us know when you get the tests done. Do not do anything irreversible on your teeth since things can easily get worse. Be skeptical as you are, it's very good, and be very careful with doctors and dentists. They like to do what they know how to do not always when this is really needed.
Meanwhile try to have your body relaxed and keep a good posture!
Maximos
01-20-2009, 04:13 PM
I may be getting an x-ray done on my TMJ Feb 10th. I will certainly let you know the results.
In the meantime, do most TMJ problems involve all of these symptoms? Are these symptoms even common... (the popping shoulders, trembling, rough muscle movements, etc)?
In the meantime, do most TMJ problems involve all of these symptoms? Are these symptoms even common... (the popping shoulders, trembling, rough muscle movements, etc)?
Thelma-Louise
01-20-2009, 06:09 PM
Yes sadly all these symptoms are common when the problem is on the severe or extreme side or has progressed as a result of not being treated. For some the onset is quite sudden and for others it progresses ove time. These symptoms generally indicate that the problem or dysfunction has also affected other parts of the underlying musculo-skeletal structure - primarily that of the neck or c-spine due to its relationship and proximity with the lower jaw - it is here that most neurological msging and major nerves converge and pass thru - kind of like a super highway - and where the atlas and axis of the cervical spine are located which maintain the balance and position of the cranium and the alignment of the spine. Interference or misalignment here - whether caused by tm joint dysfunction or bite isses or resulting form other forms of injury or trauma - will generally result in similar symptoms.
PS: B/c of the nature of the symptoms - it still would not hurt to see a neurolgoist and possibly get an MRI of the brain - just to be on the safe side and rule out other medical condtions.
PS: B/c of the nature of the symptoms - it still would not hurt to see a neurolgoist and possibly get an MRI of the brain - just to be on the safe side and rule out other medical condtions.
Maximos
05-09-2009, 09:17 PM
Update --
An x-ray of my back showed that a disk in my upper back was rotated. I went for a few weeks for treatment at the chiropractic and that particular issue seems a little better.
TMJ x-rays seem normal.
Everything else seems to be getting worse. For example, both my knees now pop all the time. My neck is always painful/catching at angles and such. My shoulders have deteriorated as well. Just very unpleasant all around.
I don't know what to do at this point... I saw a TMJ specialist and he recommended physical therapy, which is why I went to the chiropractic. My insurance didn't cover the visit, and we spent $200 for what was basically 15 minutes with the specialist.
My hands shake noticeably after exercising (running on a treadmill).
When I wake up, my wrists and upper arms are painful and my hands have a weak grip. I can no longer weight-lift like I used to be able to. An observation that I made just yesterday -- I was arm-wresting a friend and couldn't win because of the pain in my upper arm/shoulder... It's hard to describe, but it was like something was 'split'. Another daily example would be taking my phone in and out of my pocket... if I do it a certain way, my whole arms trembles as I do so (visually imperceptible but I can feel it).
Do these symptoms match any other kind of disorder...? I don't understand how a 17-year-old can be suffering with all of this already. The first symptoms of my TMJ manifested themselves one year and four months ago. I wonder what the state of my condition will be a year, two years from now... there must be some sort of solution to get me back to how I was this time two years ago (before TMJ), right?
Any help would be appreciated.
An x-ray of my back showed that a disk in my upper back was rotated. I went for a few weeks for treatment at the chiropractic and that particular issue seems a little better.
TMJ x-rays seem normal.
Everything else seems to be getting worse. For example, both my knees now pop all the time. My neck is always painful/catching at angles and such. My shoulders have deteriorated as well. Just very unpleasant all around.
I don't know what to do at this point... I saw a TMJ specialist and he recommended physical therapy, which is why I went to the chiropractic. My insurance didn't cover the visit, and we spent $200 for what was basically 15 minutes with the specialist.
My hands shake noticeably after exercising (running on a treadmill).
When I wake up, my wrists and upper arms are painful and my hands have a weak grip. I can no longer weight-lift like I used to be able to. An observation that I made just yesterday -- I was arm-wresting a friend and couldn't win because of the pain in my upper arm/shoulder... It's hard to describe, but it was like something was 'split'. Another daily example would be taking my phone in and out of my pocket... if I do it a certain way, my whole arms trembles as I do so (visually imperceptible but I can feel it).
Do these symptoms match any other kind of disorder...? I don't understand how a 17-year-old can be suffering with all of this already. The first symptoms of my TMJ manifested themselves one year and four months ago. I wonder what the state of my condition will be a year, two years from now... there must be some sort of solution to get me back to how I was this time two years ago (before TMJ), right?
Any help would be appreciated.
Thelma-Louise
05-10-2009, 12:05 AM
Cranial mandibular Cervical Disorder aka Dental Distress Sydnrome can cause most if not all of your symptoms - its when an imbalance in the jaw due to either bite or tm joint problems cause the entire musculoskeltal structure to shift, rotate and torque. It starts with the jaw and generally progresses through the cranium (some may notice a change in facial features or shape of the head) and then to the neck (cracking, tilting head, forward head, etc). With the sphenoid (a bone behind the nose) and the c-spine (atlas and axis) now off kilter or twisted - the rest of the body follows so the spine may twist and cause bulging discs, and the hips and pelvis may shift. With the major components that are primarily responsible for our well now skewed all kinds of symptoms can result such as numbness in the extremities, muscle twitching, difficulty walking, joints throughout the body cracking, loss of upper body strength, changes in posture, leg length, etc - the symptoms are varied and far reaching. Along the way a person can be diagnosed with numerous "syndromes" as the condition progresses, like scoliosis, thorasic outlet syndrome, dyskinesia, dystonia, dysplasia - not sure if I have them all spelled correctly, but you get the idea.
If you haven't been to a neurologist yet you may want to at least get evaluated for any neurological disorders.
I do sympathize with you b/c in my first 2 yrs with this problem I spent literally thousand$ going from dr to dr trying to figure out what was wrong with me.
Should the neurologist not find anything then you may want to look into an applied kinesiology chiro or neurocranial restructuring (NCR) - the NCR is an invasive but safe procedure which I would leave until you have exhausted all other possible therapies and treatments.
If you haven't been to a neurologist yet you may want to at least get evaluated for any neurological disorders.
I do sympathize with you b/c in my first 2 yrs with this problem I spent literally thousand$ going from dr to dr trying to figure out what was wrong with me.
Should the neurologist not find anything then you may want to look into an applied kinesiology chiro or neurocranial restructuring (NCR) - the NCR is an invasive but safe procedure which I would leave until you have exhausted all other possible therapies and treatments.
Maximos
05-10-2009, 12:18 AM
Well, that all sounds like a lot of fun. And probably a lot of money as well.
Have you submitted to any of the treatments? How have you responded?
Have you submitted to any of the treatments? How have you responded?
StillHope
05-10-2009, 12:37 AM
Since you are able to exercise I'd suggest trying something like Chi-Qunk (sorry, can't remember the spelling). It helps to relax the muscles and to align the body. Just if we assume that your problems are jaw/bite related try not to close you jaw so that the teeth won't touch when you exercise. This will allow your body to unwind at least for a while. If your symptoms will improve and you will feel less torqued you will at least know what the cause is and will be able to think on how to fix them.
As T-L suggests I'd check it with a neurologist as well, just to be safe you are not missing smth.
As T-L suggests I'd check it with a neurologist as well, just to be safe you are not missing smth.
Thelma-Louise
05-10-2009, 01:44 AM
Well, that all sounds like a lot of fun. And probably a lot of money as well.
Have you submitted to any of the treatments? How have you responded?
I have done pretty well with a chiro using AK - after seeing 2 other chiros and doing PT and cranial sacral therapy and failed splint therapy with 4 tmj dentists - this is probably the best I have been in the 5 yrs since this started - I say best in that if you have seen some of my earlier posts things were quite bad - severe enough that I had to leave a job and go on SSDI - was virtually non-functional for almost 3 yrs. But along the way my teeth were filed down and crowned, and then re-filed and crowned, etc so now I am dealing with no bite whatsoever and all that entails. But overall a lot of the widespread symptoms throughout my entire body have improved - some are now gone although others still linger or return on occassion. Hopefully if I ever get my bite restored the rest will become just a bad memory as well. BTW The treatments are covered by medical insurance.
Have you submitted to any of the treatments? How have you responded?
I have done pretty well with a chiro using AK - after seeing 2 other chiros and doing PT and cranial sacral therapy and failed splint therapy with 4 tmj dentists - this is probably the best I have been in the 5 yrs since this started - I say best in that if you have seen some of my earlier posts things were quite bad - severe enough that I had to leave a job and go on SSDI - was virtually non-functional for almost 3 yrs. But along the way my teeth were filed down and crowned, and then re-filed and crowned, etc so now I am dealing with no bite whatsoever and all that entails. But overall a lot of the widespread symptoms throughout my entire body have improved - some are now gone although others still linger or return on occassion. Hopefully if I ever get my bite restored the rest will become just a bad memory as well. BTW The treatments are covered by medical insurance.
Maximos
05-10-2009, 02:08 AM
Are they? They aren't filed under TMJ or anything like that?
If I were to get my bite restored, what does that entail?
If I were to get my bite restored, what does that entail?
Molly Alex
08-06-2009, 07:17 AM
Hi Thelma Louise
I have not posted anything for ages now as my problems are unresolved and at this stage I do not know where to go next. What has prompted me to reply is your excellent description of Cranial Mandibular cervical disorder / DDS
which at least encourages me that there is someone else out there who knows what I am talking about.
My current dentist has been adjusting my bite for about 18 months now with no improvement, in fact things are worse because I am in a no bite position like you on the back teeth. Net effect is that my mandible appears to have slipped even further back. Dentist has suggested that the sphenoid has shifted back and that I look for a cranial osteopath specialised in such matters to see if anything can be done. Trouble is I am in UK and not sure if I can find the right person here.
Bodily I have everything you describe, shifted pelvis, discomfort walking, scoliosis in spine, severe pain and restriction of movement in neck and more.
You will be able to find a brief history on my previous posts if you can find it.
Otherwise would be happy to take you through it.Basically my bite has been altered so much that everything has been thrown out of place.
Would be pleased to hear anything you might have to say
I have not posted anything for ages now as my problems are unresolved and at this stage I do not know where to go next. What has prompted me to reply is your excellent description of Cranial Mandibular cervical disorder / DDS
which at least encourages me that there is someone else out there who knows what I am talking about.
My current dentist has been adjusting my bite for about 18 months now with no improvement, in fact things are worse because I am in a no bite position like you on the back teeth. Net effect is that my mandible appears to have slipped even further back. Dentist has suggested that the sphenoid has shifted back and that I look for a cranial osteopath specialised in such matters to see if anything can be done. Trouble is I am in UK and not sure if I can find the right person here.
Bodily I have everything you describe, shifted pelvis, discomfort walking, scoliosis in spine, severe pain and restriction of movement in neck and more.
You will be able to find a brief history on my previous posts if you can find it.
Otherwise would be happy to take you through it.Basically my bite has been altered so much that everything has been thrown out of place.
Would be pleased to hear anything you might have to say
AndreaL
08-06-2009, 09:43 AM
Hi Molly,
I would be able to offer you advice regarding a cranial osteopath to contact here in the UK, who I am confident would be able to help you, he definitley knows what he's dealing with regards to TMJD/Cranial disorders. Unfortunately I don't know how to get this information to you due to not being permitted to sharing links on this forum!
It's such a shame because he has helped me with symptoms you describe.
I would be able to offer you advice regarding a cranial osteopath to contact here in the UK, who I am confident would be able to help you, he definitley knows what he's dealing with regards to TMJD/Cranial disorders. Unfortunately I don't know how to get this information to you due to not being permitted to sharing links on this forum!
It's such a shame because he has helped me with symptoms you describe.
trychocolate
08-06-2009, 12:38 PM
Hi Maximos--sorry you are going through so much at such a young age. Unfortunately, many problems can really manifest themselves around the age of 20, but you aren't even there yet!
I hope that you don't mind me asking, but you mentioned that you did have some MRI's done. I was wondering if you actually had one done of your full spine? I imagine you did because of all those problems. No abnormalities at all?
I am glad you have been getting so much help here with the best explanations of the severity and extent of what having TMJ involves.
If you can examine some of these therapies like cranial sacral, that might not be a bad idea if you can afford it. This therapy might start out non-invasive as the therapist gets to know you, how your body functions, and exactly where all these problems are coming from. The therapist doesn't want to hurt you and lose your trust and confidence. Tell him/her right off the bat that you are eager for something intensive and that you don't mind a little pain if some good will come out of it. The therapist will still exercise caution as this therapy is designed to work with the body mechanisms, not against; therapist will then understand that you are serious and 'adventurously' willing to endure some slight discomfort on the road to relief. Remember, there are good ones and not so good, like everything else.
I hope to be of help, and I don't mean to be forcing a therapy on you, only suggesting, as I am trying this right now for TMJ/bad spine problems, including lots of your symptoms and others.
Hoping you find some relief (sometimes that's all we can get when little can be done for the time being),
choc
I hope that you don't mind me asking, but you mentioned that you did have some MRI's done. I was wondering if you actually had one done of your full spine? I imagine you did because of all those problems. No abnormalities at all?
I am glad you have been getting so much help here with the best explanations of the severity and extent of what having TMJ involves.
If you can examine some of these therapies like cranial sacral, that might not be a bad idea if you can afford it. This therapy might start out non-invasive as the therapist gets to know you, how your body functions, and exactly where all these problems are coming from. The therapist doesn't want to hurt you and lose your trust and confidence. Tell him/her right off the bat that you are eager for something intensive and that you don't mind a little pain if some good will come out of it. The therapist will still exercise caution as this therapy is designed to work with the body mechanisms, not against; therapist will then understand that you are serious and 'adventurously' willing to endure some slight discomfort on the road to relief. Remember, there are good ones and not so good, like everything else.
I hope to be of help, and I don't mean to be forcing a therapy on you, only suggesting, as I am trying this right now for TMJ/bad spine problems, including lots of your symptoms and others.
Hoping you find some relief (sometimes that's all we can get when little can be done for the time being),
choc
Molly Alex
08-06-2009, 12:52 PM
Hi AndreaL
I would be so pleased to hear from you but dont know how to go about it. I am in Manchester. I am looking through the site to see if there is a way to contact?
I would be so pleased to hear from you but dont know how to go about it. I am in Manchester. I am looking through the site to see if there is a way to contact?
Pegala
08-06-2009, 05:15 PM
Hi AndreaL
I would be so pleased to hear from you but dont know how to go about it. I am in Manchester. I am looking through the site to see if there is a way to contact?
Ladies,
I do believe that we're allowed to name a doctor and the area that they practice in, in the U.S. this means city and state. Perhaps you can get the name and location of your doctor out this way.
Peggy
I would be so pleased to hear from you but dont know how to go about it. I am in Manchester. I am looking through the site to see if there is a way to contact?
Ladies,
I do believe that we're allowed to name a doctor and the area that they practice in, in the U.S. this means city and state. Perhaps you can get the name and location of your doctor out this way.
Peggy