Comments on: Rachel and her TMJ Journey http://jointpainrelief.com.au Wed, 11 Apr 2012 12:54:09 +0000 hourly 1 By: Jess http://jointpainrelief.com.au/parent-stories/rachel-tmj-journey/#comment-108 Jess Thu, 08 Mar 2012 10:17:18 +0000 http://jointpainrelief.com.au/?page_id=173#comment-108 Hi, I have a very similar issue to your daughter. I am 24 and started experiencing jaw pain about 3 years ago- one morning my jaw just started clicking, and within 48 hours i could only open my mouth about 1cm. I saw multiple specialists, many of whom said it was a purely psychological issue causing stress/grinding of my teeth. I really felt like they weren't considering what I was saying- i was already on anti-depressants (long term), but was not currently experiencing stress... i knew what it was like to be depressed, but this was purely physical! I had an MRI, and one side of my jaw was dislocated and the cartilage had moved out of the joint socket. I went through periods on a purely liquid diet, discussed joint reconstruction with specialists... this was not recommended as minor issues with surgery can make the problem much worse. I began physiotherapy and within a few months my joint had moved back into the correct position. it took quite a few physios to find one that really helped me. Now 18 months later, i have stopped having physio but the opposite side of my jaw is now causing me big problems and not opening properly. I have a new splint and it seems to make my jaw much worse. I'd be really interested to know how your daughter went. thanks! Hi,
I have a very similar issue to your daughter. I am 24 and started experiencing jaw pain about 3 years ago- one morning my jaw just started clicking, and within 48 hours i could only open my mouth about 1cm. I saw multiple specialists, many of whom said it was a purely psychological issue causing stress/grinding of my teeth. I really felt like they weren’t considering what I was saying- i was already on anti-depressants (long term), but was not currently experiencing stress… i knew what it was like to be depressed, but this was purely physical! I had an MRI, and one side of my jaw was dislocated and the cartilage had moved out of the joint socket.

I went through periods on a purely liquid diet, discussed joint reconstruction with specialists… this was not recommended as minor issues with surgery can make the problem much worse. I began physiotherapy and within a few months my joint had moved back into the correct position. it took quite a few physios to find one that really helped me. Now 18 months later, i have stopped having physio but the opposite side of my jaw is now causing me big problems and not opening properly. I have a new splint and it seems to make my jaw much worse. I’d be really interested to know how your daughter went.
thanks!

]]> By: daisy http://jointpainrelief.com.au/parent-stories/rachel-tmj-journey/#comment-69 daisy Thu, 16 Jun 2011 15:46:51 +0000 http://jointpainrelief.com.au/?page_id=173#comment-69 Hi there Have you had your daughter tested for fibromyalgia? The symptoms are very similar, her story is very similar. It is worthwhile researching the disease, I wish you luck. Daisy Hi there

Have you had your daughter tested for fibromyalgia? The symptoms are very similar, her story is very similar. It is worthwhile researching the disease, I wish you luck.

Daisy

]]> By: Julia http://jointpainrelief.com.au/parent-stories/rachel-tmj-journey/#comment-43 Julia Mon, 17 Jan 2011 00:34:44 +0000 http://jointpainrelief.com.au/?page_id=173#comment-43 Hi There, Sounds like you have had a tough run. It is so important to get the right diagnosis so you can find the right people. We have been attending a specialist pain clinic at a public hospital and it has really helped my daughter. There is a lot more knowledge of how to work with pain now. I really hope you get some help from specialists who know what you need. Best wishes Julia Hi There,
Sounds like you have had a tough run. It is so important to get the right diagnosis so you can find the right people. We have been attending a specialist pain clinic at a public hospital and it has really helped my daughter. There is a lot more knowledge of how to work with pain now. I really hope you get some help from specialists who know what you need.
Best wishes
Julia

]]> By: Julia http://jointpainrelief.com.au/parent-stories/rachel-tmj-journey/#comment-42 Julia Mon, 17 Jan 2011 00:31:50 +0000 http://jointpainrelief.com.au/?page_id=173#comment-42 Hi Anne, I will pass on you email to Christine. Thanks for getting in touch. Julia Hi Anne, I will pass on you email to Christine. Thanks for getting in touch. Julia

]]> By: MaidInAustralia http://jointpainrelief.com.au/parent-stories/rachel-tmj-journey/#comment-41 MaidInAustralia Fri, 14 Jan 2011 07:14:52 +0000 http://jointpainrelief.com.au/?page_id=173#comment-41 I feel so sorry for your daughter. I have spent my entire life in pain. It wasn't until I was in my 30s that I was diagnosed with arthritis (ankylosing spondylitis). I then had fibromyalgia and still do. When pregnant, my pelvis split and I had pelvic sympasis dysfunction. This year, after loads of dental work to no avail (and spending time being treated for anxiety and depression) I was diagnosed with TMJ. The pain is incredible. I am trying to get in to see Kerry Read, who I'm told, works miracles. I don't know where you are, but I really do hope your daughter doesn't have to grow up in pain and being fobbed off like I did. xo I feel so sorry for your daughter. I have spent my entire life in pain. It wasn’t until I was in my 30s that I was diagnosed with arthritis (ankylosing spondylitis). I then had fibromyalgia and still do. When pregnant, my pelvis split and I had pelvic sympasis dysfunction. This year, after loads of dental work to no avail (and spending time being treated for anxiety and depression) I was diagnosed with TMJ. The pain is incredible. I am trying to get in to see Kerry Read, who I’m told, works miracles. I don’t know where you are, but I really do hope your daughter doesn’t have to grow up in pain and being fobbed off like I did. xo

]]> By: anne http://jointpainrelief.com.au/parent-stories/rachel-tmj-journey/#comment-38 anne Tue, 21 Dec 2010 05:01:10 +0000 http://jointpainrelief.com.au/?page_id=173#comment-38 I came across this site and was wondering if it was still monitored. I have a somewhat similar story with my own daughter. would like to exchange e-mails if possible. I came across this site and was wondering if it was still monitored. I have a somewhat similar story with my own daughter. would like to exchange e-mails if possible.

]]> By: georgie http://jointpainrelief.com.au/parent-stories/rachel-tmj-journey/#comment-23 georgie Thu, 15 Apr 2010 04:30:44 +0000 http://jointpainrelief.com.au/?page_id=173#comment-23 Hi Christine, I am 28 and reading your daughters story was eerily similar to mine, except with each specialist I saw, I told them I had hypermobile joints. I am on pain meds and have been recommended to take anti-depressants, which I also wish to refuse. I have chronic pain and my daily life is severely affected. It is difficult for me to give advice because I don't have any answers yet on how to get out of this mess. I really enjoy going to a myotherapist regularly as this helps relieve the muscle tension and have accepted that I need a lot more sleep than others. Eating a naturopathically prescribed diet helps a little, as does really, really, really gentle Iyengar yoga on a good day. Having an understanding mum and dad go a long way too (I moved back home as I work part time instead of full time). I feel that my lesson with this is that I have to learn how to listen to my body on a hyper aware level and that this will be the key to my recovery. Best of Luck Hi Christine,

I am 28 and reading your daughters story was eerily similar to mine, except with each specialist I saw, I told them I had hypermobile joints. I am on pain meds and have been recommended to take anti-depressants, which I also wish to refuse. I have chronic pain and my daily life is severely affected. It is difficult for me to give advice because I don’t have any answers yet on how to get out of this mess. I really enjoy going to a myotherapist regularly as this helps relieve the muscle tension and have accepted that I need a lot more sleep than others. Eating a naturopathically prescribed diet helps a little, as does really, really, really gentle Iyengar yoga on a good day.
Having an understanding mum and dad go a long way too (I moved back home as I work part time instead of full time).
I feel that my lesson with this is that I have to learn how to listen to my body on a hyper aware level and that this will be the key to my recovery.
Best of Luck

]]> By: kathy http://jointpainrelief.com.au/parent-stories/rachel-tmj-journey/#comment-22 kathy Tue, 13 Apr 2010 03:50:23 +0000 http://jointpainrelief.com.au/?page_id=173#comment-22 hi, my daughter began with neck and jaw pain approx 3 years ago. she is almost 8 now. We struggled with drs and the hospitals and finally got a diagnosis of ehler danlos syndrome. very similar to JHS. All her joints are painful, dislocate all the time. IT is very hard because as you say, when distracted they appear to be fine but on resting it is a disaster. We are still struggling with her jaw issues, but have been told it is just part of the EDS. At the moment she is taking painstop for the pain but it is awful when you have no idea what to do. Was nice to hear a story that was so similar to ours. Sometimes you feel rather alone! kathy hi, my daughter began with neck and jaw pain approx 3 years ago. she is almost 8 now. We struggled with drs and the hospitals and finally got a diagnosis of ehler danlos syndrome. very similar to JHS. All her joints are painful, dislocate all the time. IT is very hard because as you say, when distracted they appear to be fine but on resting it is a disaster. We are still struggling with her jaw issues, but have been told it is just part of the EDS. At the moment she is taking painstop for the pain but it is awful when you have no idea what to do. Was nice to hear a story that was so similar to ours. Sometimes you feel rather alone!
kathy

]]> By: Kerry Read http://jointpainrelief.com.au/parent-stories/rachel-tmj-journey/#comment-12 Kerry Read Sat, 11 Jul 2009 03:12:26 +0000 http://jointpainrelief.com.au/?page_id=173#comment-12 Hi Christine, I stumbled across your post and wondered if your daughter is still having problems? I am a jaw physio and know how difficult these jaw problems can be when you have an inflammatory arthritis. The usual type of physiotherapy approach can often be way too much and actually counter productive. I am hoping you are getting some good solutions now she must be around 16 yrs old, but just wanted you to know that she is not alone, and she hasn't exaggerated her pain. Hi Christine,
I stumbled across your post and wondered if your daughter is still having problems? I am a jaw physio and know how difficult these jaw problems can be when you have an inflammatory arthritis. The usual type of physiotherapy approach can often be way too much and actually counter productive.
I am hoping you are getting some good solutions now she must be around 16 yrs old, but just wanted you to know that she is not alone, and she hasn’t exaggerated her pain.

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