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  • Is TMD causing all my neck and shoulder pain?

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    Old 04-02-2018, 09:01 AM   #1
    dooley441
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    Is TMD causing all my neck and shoulder pain?

    I am new to this page and trying to decide if I should do surgery for my TMD at the end of the month. Does this story sound familiar to anyone?

    I was diagnosed with TMJ problems when I was in high school and had much clocking, popping and locking. My dentist at the time had mentioned surgery a few times, but it never seemed to go further than that. It was not a major issue in my life and was never something I was worried about.

    Between 8 and 10 years ago my new dentist noticed my TMD and was surprised it had never been treated. He created a night splint for me and I was to wear it over night to help with night grinding. I wore it off and on for a few years and he would regularly check itís fit and clean it. Eventually it started to make my jaw pain worse and my jaw would lock up every night that I wore it. I checked back with my dentist and he confirmed that it still fit properly and advised me not to use it.

    Nearly 5 years ago (about 15 years since diagnosis) I went through a highly stressful year of work and out of nowhere in September 2013 I started experiencing extreme pain in my neck and shoulders. The pain and tension was unbearable and I could not concentrate on anything. I ended up having to go on disability as I was told I could not drive and my job is 80% driving. Symptoms were varied and during the following year I was bounced around a number of different specialists including a spine specialist, spinal surgeon, pain management specialist, neurologist, etc. Symptoms such as ataxia, numbness, tingling, nerve pain, muscle tension and pain were a daily occurrence and after a number of tests, nobody was able to find anything wrong aside from 2 slipped discs in my cervical spine and no one believed it was causing any of my symptoms. As my symptoms progressed I was rushed for an MRI as my doctors believed it was MS or Spinal stenosis. Thankfully it was neither. Since the spring of 2014 I have been on a number of medications including gabapentin (currently at 2100mg per day for nerve pain, twitching, numbness, etc), Baclofen (60mg per day for muscle tension), and nortryptaline (125mg per day for nerve pain, depression and anxiety).

    I have sought out many different treatments including physio, chiropractor, massage, acupuncture, physical therapy, reiki, trigger point injections, dry needling, Botox, and arthrocentesis with no improvement. I have been back at work since early 2015 as sitting at home in self pity was not helpful, I needed the income, and my symptoms were mostly stabilized. The chronic pain that I deal with on a daily basis is manageable with my current medications, but I would rate my daily Neck, shoulder and upper back pain between a 6 and an 8 most days. Fatigue comes and goes and it was 3 years before I was able to stay asleep for more than 30 minute intervals.

    I have also been diagnosed with a number of food allergies (fructose, gluten, night shades, onions, peppers, eggs, etc) and was diagnosed with IBS a couple years ago.

    A couple years ago a new dentist became aware of my TMD and and sent me to an orthodontist who confirmed that it was not an issue with teeth or structure and he referred me to another dentist who is also a chronic pain specialist. He referred me for an MRI which confirmed that my jaw discs were displaced on both sides and there was some degeneration of the joint. He referred me to an oral surgeon and last June we did arthrocentsis and Botox injections. It seemed to help as I was involved in a fairly serious car accident 2 weeks later and did not have any increase in pain. As the botox wore off in September my pain grew higher than it was prior to botox. However, the surgeon charged $1000 for the botox which was not covered by my insurance and I couldnít afford to do it again.

    I went back to the surgeon in October and he referred me for arthroplasty and I would be called with a surgery date at the hospital. I also went back to my pain management doctor in October and he agreed to do the botox at a much cheaper price and was done in January 2018. It made my pain worse for the first 4-5 weeks and then settled back down to my general level of daily pain (6-8 out of 10). I will be going back for botox on April 13 to try a higher dose and I was given a surgery date of April 26, 2018.

    I am trying to decide if surgery is a good plan or if I should just be satisfied with the regular pain level and continue with the meds. We donít know for sure that my neck and shoulder tension is caused by my TMD and I am afraid that the surgery will make things even worse... has anyone else had their TMD cause more issues with neck and back than facial pain/headaches?? Who has had the arthroplasty done? Did it help? To what extent? Has anyone had any of the risks or complications? Have you come out worse than you went in? Any advice or opinions are greatly appreciated. TIA!

    Last edited by dooley441; 04-02-2018 at 10:53 AM.

     
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    Old 04-09-2018, 09:56 AM   #2
    KathySt
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    Re: Is TMD causing all my neck and shoulder pain?

    Hi Dooley441,
    My neck and shoulders are always involved with my TMJ pain. I also have a slipped disc in my neck, btw the 5th & 6th vertebrae. The worst pain, tension and spasming focuses on one side; but it goes back and forth....one day the L side, one day the R. I have knots between my shoulder blades that are part of this. The worst pain will be in my jaw(right or left side) and that side, at the base of my skull. My neck and shoulders get very tight and there is painful spasming, focused on that side, but throughout my body. On a bad day, I am in bed, trying not to throw up. Nausea can be severe too. I can go for 2 or 3 months without a bad day but at some point, they always happen. I've never considered surgery, but if it got worse, I might. Before I was diagnosed, one Dr. told me that I might have Lupus, because I also had a rash around my mouth. Turned out that I was allergic to Fluoride, in addition to my neck and jaw diagnosis. My reaction then was Phew, not Lupus! I dumped that Dr. I tried a night guard too and it eventually made things worse.

     
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    Old 04-11-2018, 07:49 PM   #3
    ladybud
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    Re: Is TMD causing all my neck and shoulder pain?

    Quote:
    Originally Posted by dooley441 View Post
    I am new to this page and trying to decide if I should do surgery for my TMD at the end of the month. Does this story sound familiar to anyone?

    I was diagnosed with TMJ problems when I was in high school and had much clocking, popping and locking. My dentist at the time had mentioned surgery a few times, but it never seemed to go further than that. It was not a major issue in my life and was never something I was worried about.

    Between 8 and 10 years ago my new dentist noticed my TMD and was surprised it had never been treated. He created a night splint for me and I was to wear it over night to help with night grinding. I wore it off and on for a few years and he would regularly check itís fit and clean it. Eventually it started to make my jaw pain worse and my jaw would lock up every night that I wore it. I checked back with my dentist and he confirmed that it still fit properly and advised me not to use it.

    Nearly 5 years ago (about 15 years since diagnosis) I went through a highly stressful year of work and out of nowhere in September 2013 I started experiencing extreme pain in my neck and shoulders. The pain and tension was unbearable and I could not concentrate on anything. I ended up having to go on disability as I was told I could not drive and my job is 80% driving. Symptoms were varied and during the following year I was bounced around a number of different specialists including a spine specialist, spinal surgeon, pain management specialist, neurologist, etc. Symptoms such as ataxia, numbness, tingling, nerve pain, muscle tension and pain were a daily occurrence and after a number of tests, nobody was able to find anything wrong aside from 2 slipped discs in my cervical spine and no one believed it was causing any of my symptoms. As my symptoms progressed I was rushed for an MRI as my doctors believed it was MS or Spinal stenosis. Thankfully it was neither. Since the spring of 2014 I have been on a number of medications including gabapentin (currently at 2100mg per day for nerve pain, twitching, numbness, etc), Baclofen (60mg per day for muscle tension), and nortryptaline (125mg per day for nerve pain, depression and anxiety).

    I have sought out many different treatments including physio, chiropractor, massage, acupuncture, physical therapy, reiki, trigger point injections, dry needling, Botox, and arthrocentesis with no improvement. I have been back at work since early 2015 as sitting at home in self pity was not helpful, I needed the income, and my symptoms were mostly stabilized. The chronic pain that I deal with on a daily basis is manageable with my current medications, but I would rate my daily Neck, shoulder and upper back pain between a 6 and an 8 most days. Fatigue comes and goes and it was 3 years before I was able to stay asleep for more than 30 minute intervals.

    I have also been diagnosed with a number of food allergies (fructose, gluten, night shades, onions, peppers, eggs, etc) and was diagnosed with IBS a couple years ago.

    A couple years ago a new dentist became aware of my TMD and and sent me to an orthodontist who confirmed that it was not an issue with teeth or structure and he referred me to another dentist who is also a chronic pain specialist. He referred me for an MRI which confirmed that my jaw discs were displaced on both sides and there was some degeneration of the joint. He referred me to an oral surgeon and last June we did arthrocentsis and Botox injections. It seemed to help as I was involved in a fairly serious car accident 2 weeks later and did not have any increase in pain. As the botox wore off in September my pain grew higher than it was prior to botox. However, the surgeon charged $1000 for the botox which was not covered by my insurance and I couldnít afford to do it again.

    I went back to the surgeon in October and he referred me for arthroplasty and I would be called with a surgery date at the hospital. I also went back to my pain management doctor in October and he agreed to do the botox at a much cheaper price and was done in January 2018. It made my pain worse for the first 4-5 weeks and then settled back down to my general level of daily pain (6-8 out of 10). I will be going back for botox on April 13 to try a higher dose and I was given a surgery date of April 26, 2018.

    I am trying to decide if surgery is a good plan or if I should just be satisfied with the regular pain level and continue with the meds. We donít know for sure that my neck and shoulder tension is caused by my TMD and I am afraid that the surgery will make things even worse... has anyone else had their TMD cause more issues with neck and back than facial pain/headaches?? Who has had the arthroplasty done? Did it help? To what extent? Has anyone had any of the risks or complications? Have you come out worse than you went in? Any advice or opinions are greatly appreciated. TIA!
    Wow, I hope you have had a neurosurgeon consultation for the cervical disc disease. This seems to be the most likely cause of the pain and muscle spasm to me. Cervical discs can bulge or herniate (slipped disc) and put pressure on the nerve root, which in turn causes spasm and pain in the neck , shoulder and arm. This does not sound like TMJ related pain. I think you need an MRI of your neck and be evaluated for cervical nerve root irritation by a spine surgeon.

     
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    Old 04-12-2018, 04:44 PM   #4
    Geo18
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    Re: Is TMD causing all my neck and shoulder pain?

    I have TMJ and I often get pain in my neck and shoulders.

     
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    Old 05-28-2018, 09:31 AM   #5
    Movingue
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    Re: Is TMD causing all my neck and shoulder pain?

    I'll start by saying how much I can relate to your pain and going through a host of specialist from past to present.
    As I sit here today in what I would call a bad day.
    My story began 18 years ago following a jaw fracture, and fibromyalgia for the last 8 years.
    I've had specialist tell me my neck and shoulder pain was without a doubt related my TMJD. Then others say there is no relativity.
    Hoping that Im not getting to personal, but I would really like to know if you had the surgery and if so how has your outcome been. Best Regards.
    Movingue

     
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