Comments on: Rachel and her TMJ Journey

By: daisy

daisy — Thu, 16 Jun 2011 15:46:51 +0000

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

Julia — Mon, 17 Jan 2011 00:34:44 +0000

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

Julia — Mon, 17 Jan 2011 00:31:50 +0000

Hi Anne, I will pass on you email to Christine. Thanks for getting in touch. Julia

By: MaidInAustralia

MaidInAustralia — Fri, 14 Jan 2011 07:14:52 +0000

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

anne — Tue, 21 Dec 2010 05:01:10 +0000

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

georgie — Thu, 15 Apr 2010 04:30:44 +0000

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

kathy — Tue, 13 Apr 2010 03:50:23 +0000

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

Kerry Read — Sat, 11 Jul 2009 03:12:26 +0000

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.