Ehlers-Danlos Support UK
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Hi all, I hope everyone is as well as can be.

I'm still awaiting my referral to Dr Kaz Kaz, hopefully it will come through, if not I will try to go private early next year.

Anyway, I was wondering if anyone here had TMJ as well as other things.

I've had TMJ for years now and at the moment it is really playing me up and my jaw cannot open all the way and it's not meeting on the right side at all really.

It's so painful and eating really is almost impossible. I was given a gum shield by the dentist years ago, but it hasn't helped.

Does anyone have any tips if they do have it?

4 Replies

I have TMJ but my only reaction to things which cause problems is avoidance - so no steak for me! Also, sometimes, no speaking and no singing.

It doesn't seem to be the sort of thing that improves with any kind of physio, but I find that a massage is temporarily helpful.

I eat lots of soup and chickpea curry, mince dishes and slowcook beef, although that can be too chewy. I cannot take NSAIDS. At the moment I just deal with it using avoidance and pain killers, but have looked into further treatment for when it is worse: I have read that there are some treatments including Tens, ultrasound and radio waves, also using a mouth splint and Botox - have you been offered them? As a last resort my doctor offers steroid injections in any joints which get too bad.

There are other discussions about TMJ in the Chronic Pain section of healthunlocked, which might be worth looking at.

With EDShypermobility, I avoid surgery if at all possible.


I have TMJ and trigeminal neuralgia. It is awful pain

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Hiya rosesinbloom, yes TMD is par for the course with EDS/JHS/HEDS.

It's a good idea to put TMJ dysfunction into your medical history document for Dr. Kaz Kaz now, while you remember.

***You could ask Dr. Kaz Kaz to help with TMD, she can maybe get you referred to a speech therapist as apparently they deal with TMJ and swallowing problems (which you probably will have at some time or other, oh joy).***

Another route is your dentist especially if you live somewhere near a dental institute.

The HMSA or EDS UK should have articles on it, either by Dr. Alan Hakim one of our experts, or Angela Hunter who has done research on TMJ and voice and swallowing issues with EDS.

Brad Tinkle's "Joint Hypermobility Handbook" has a short chapter on it, I include a bit below here.

***There is a really good talk on the EDS UK website by Angela Hunter "It's often not so easy to swallow - inc TMJ" which is very helpful.***

As the title suggests it's about swallowing, it covers TMJ as that is so important to swallowing and nutrition. It was recorded from their 2014 conference. You have to be a member of EDS UK to watch these resources. The membership fee is well worth it for these great videos from their conferences, full of practical advice from experts in the field.

Meanwhile a few things I've gleaned:

Eating little and often and with breaks from chewing. No chewing gum or toffee (as repetitive chewing is very tiring).

If you've got a reduced mouth opening due to muscles being tighter to make up for the lax joint, have a child's size toothbrush (or use an electric toothbrush as the head's pretty small anyway and there is less movement needed to clean the teeth).

Even toast may need to be cut up to make it less difficult to chew. So meat could be minced or cut fine or falling-apart tender? Maybe cut up an apple rather than bite into it and get jaw 'stuck'.

When at the dentists explain you have temporomandibular joint dysfunction and need frequent breaks to close your mouth and relax your jaw. My dentist builds in frequent breaks for this.

A little excerpt from Dr. Tinkle's Joint Hypermobility Handbook on TMJ:

"Treatment varies considerably according to the cause. In hypermobility, splint therapy may be required in addition to analgesics, such as NSAIDs (anti-inflammatories such as ibuprofen), to relieve pain. Prevention and treatment of dislocation resulting from hypermobility is to avoid excessive range of motion. For prevention, people often benefit from talking and chewing with a more tightly closed mouth to allow the ligaments of the jaw to rest and shorten (tighten) over time. These individuals also complain of dental procedures causing muscle cramps and pain. This should be openly discussed with your dental health provider and you should take frequent breaks during prolonged dental examinations or treatments. Treatment of chronic pain or frequent dislocation often involves physical therapy in addition to the NSAIDs. Deep penetrating heat or friction muscle massage may relax stiff painful muscles as well. Surgery to tighten the ligaments of the temporomandibular joint is rarely necessary to prevent recurrent dislocations."

Your cervical spine can affect your swallowing and jaw and so on. Being in pain at night can make you clench your teeth which affects your neck, your jaw, and even your ears as it can cause earache. So Jay66 's massage suggestion could also work for you if your neck is contributing to the problem.

I have a mouth guard for bruxism, but still find I clench my jaw, which can actually bruise the nerve in the gums and makes me feel as if a filling's come out or I've got toothache or am more sensitive to hot and cold food, in addition to TMJ being aggravated by it, so **making sure your pain relief is adequate at night also could help.**

Even better than pain relief, to help chronic neck pain there are some great things you can do, including very very gently warm-up exercises, including ones for the neck. You could find some online. Done very very gently, not a lot of reps, little and often, they have a cumulative effect of freeing up the neck and that eventually helps prevent pain flare-ups, which helps prevent clenching etc., which prevents build-up of TMD.

Best wishes as always, Boombiddy.


There is a procedure called sphenocath where they running spaghetti size tubes through your nasal passages and sray a grouping of nerves that control the face and neck with lidocaine and that stops pain in face and neck. I was suppose to get it but insurance would not approve it. Ahhhhhh!!!


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