Understanding temporomandibular disorders in Ehlers-Danlos syndrome (EDS) 

Estimated reading time: 6 minutesI’ve shared in a previous blog how my adolescence was plagued by TMJ pain and locking overnight. I struggled to chew food, and it would constantly click. The jaw joint, like any other in the body, relies on stability and proper muscular support. I had some imbalances at that time that caused daily pain.

I’m delighted to invite the scientific adviser to The Zebra Club, Dr Leslie Russek, to join us on this blog on the TMJ and the issues it presents for those of us with EDS and symptomatic hypermobility. Dr Russek will explore the connection between TMJ issues and hypermobility and how to improve stability with gentle exercises to reduce discomfort.

Temporal mandibular joint disorders, or TMD, are commonly reported in hypermobility and EDS. While TMD is common in people without connective tissue disorders, the increased hypermobility makes stability and control of this complex joint difficult and increases the chance of difficulties (1). A recent systematic review of 12 studies assessing EDS and the TMJ estimated that TMD is reported in around 65% of patients (ranging from 22-100%) (2).

Anatomy of the TMJ

The joint can be described as a sliding ball and socket joint. The joint is where the condyle (round prominence at the end of a bone) of the mandible connects with the temporal bone at a depression called the mandibular fossa (3).

OpenStax College, CC BY 3.0 <https://creativecommons.org/licenses/by/3.0>, via Wikimedia Commons

It is an unusual joint in several ways:

1. Because the jawbone connects the two TMJ joints, they must always function together, though they are not always doing the same movement. Problems in one joint will affect the function of the other.
2. Because talking and chewing both move the jaw, the joint moves thousands of times per day, even if you rest in bed all day.
3. The jaw has a disc, similar to the meniscus in the knee. This disc protects the jaw during repeated movements. However, the disc or tissues that hold it in place can become damaged.
4. The jaw muscles are strongly affected by stress – think about clenching your teeth. As a result, jaw pain is closely linked to psychological distress.

There are 4 pairs of special muscles controlling the jaw, called ‘muscles of mastication’, or chewing muscles. Because chewing requires the most strength, 3 pairs (masseter, temporalis, and medial pterygoid ‘terrigoid’) help to close the jaw to chew. The lateral pterygoid opens the jaw and pokes it forward (protraction) and moves the jaw sideways.

OpenStax, CC BY 4.0 <https://creativecommons.org/licenses/by/4.0>, via Wikimedia Commons

These joints are involved in many different types of motion and functions including (4):

• Chewing
• Sucking
• Speaking
• Breathing
• Swallowing
• Maintaining the correct pressure of the middle ear
• Facial expressions

TMJ joint laxity and hypermobility

People with hypermobile jaws can often have a wide range of jaw opening beyond what is considered normal, but then may have limited opening due to dislocation. This may be due to stress or injury. This range can also decrease with age (5). This excessive mobility places extra stress on the disc inside the joint and the elastic fibers that hold that disc in place. If these elastic fibers become overstretched, you can develop pain, clicking, or locking in the jaw.

Jaw symptoms linked to EDS.

Symptoms of TMD can include (5):

• Limited opening of the jaw
• Difficulty chewing
• Pain in front of the ear
• Headaches in the temples or side of the jaw
• Pain in the teeth
• Inability to turn the head and/or neck
• Fullness, itching, or pain in the ears
• Inability to get the back teeth to touch
• Popping or clicking of the joint

Diagnosing TMJ disorders in EDS patients

It best to work with a physiotherapist or dentist that specializes in oral facial pain. But you may be able to figure out some of the common problems based on your symptoms.

There are multiple types of TMD, including the following (6):

• Myalgia – muscular pain in the temporalis and/or masseter muscles that is impacted by the jaw. This can be local or refer to a larger area.
• Joint pain in the TMJ – this can be felt in the jaw, temple, or ear
• Headache – specifically in the temple area and related to TMD impacted by the jaw
• Disc displacement– the disc is displaced, usually forward, but can deviate to the sides.
  • This can happen with reduction: the disc goes back in when the mouth opens with a “reciprocal click,” with popping or snapping sounds. A reciprocal click pops once when you open the jaw (the disc is actually popping back into place) and again when you close the jaw (the disc is popping out of place)
  • This can happen with intermittent locking of the TMJ, which causes limited opening
  • This can be a closed lock, without reduction with a limited opening – the disc does not go back in, and jaw opening remains limited
  • You can have disc displacement without limited opening and without it going back in (reduction)
• Joint degeneration – Osteoarthritis
• Subluxation and dislocation – partial dislocation of the joint for a very short time, or long-lasting
  • When it can be put back yourself, it is considered a subluxation
  • If a clinician needs to help put it back, this is a dislocation, also called an open lock

What do trigger points in the muscles of mastication feel like?

When muscles are overworked, they can develop trigger points, and this is true for jaw muscles as well. Trigger points can refer pain in different distributions. Trigger points in these muscles can also cause toothaches, ringing in the ear, sinus pain, and trouble swallowing.

How cervical spine issues affect TMJ function

The jaw is connected to the neck, and problems in one can affect the other. First, posture in the neck affects the posture of the jaw. Also, people with cervical instability might use the jaw muscles to help stabilize the neck, leading to jaw pain. In contrast, people with jaw problems may have muscle tension around the jaw that affects the neck. It is all connected!

The effects of mouth breathing on the TMJ

We are designed to breathe through our noses, and there are many important health reasons for that(7). One of the reasons is that holding the mouth open activates the lateral pterygoid muscle, which then pulls the disc out of its proper place, leading to disc dislocation and clicking or locking. Another reason is that mouth breathing leads to forward head posture, which is bad for the neck. Watch this video to see why these things occur.

What is proper jaw “posture”?

Just like the rest of the body, there is a proper ‘posture’ for the jaw and tongue. The back teeth should not be touching but should have about 2 mm of ‘freespace’ between them. Teeth should only touch when you chew. The tongue should be on the roof of the mouth, with the tip just behind the top teeth. You can find out more in the blog about orofacial myofunctional therapy.

Treatment approaches for TMJ in Ehlers-Danlos syndrome

First, it is important to figure out why you are having TMD and address the causes, otherwise, no treatment will work.

• Are your jaw and tongue in the proper position? Poor posture strains the joints, muscles, and the elastic fibers that hold the disc in place.
• Are your jaw muscles relaxed whenever you are not chewing? Do you clench or grind at night?
• Are you breathing through your mouth?
• Do you store stress in your jaw?
• If your jaw pain flares after going to the dentist, this handout includes a page to take to the dentist with you, with ideas for how to protect your jaw (and neck) during dental care.

Pain management and effective options

• Learn to relax the jaw muscles. Heat or massaging the jaw muscles can help. Jeannie addresses this in the Headache and Migraine Relief video found in the Pain Management section of The Zebra Club.
• General relaxation exercises, such as slow breathing or mindfulness meditations, can help.
• Improve your neck and jaw posture, so you aren’t hanging on muscles that pull on the jaw.
• If you have upper cervical instability, try to manage that so the jaw muscles are not trying to do the job of the neck stabilizers.
• There are coordination exercises for jaw muscles; a TMJ specialist or an orofacial myofunctional therapist can teach you.
• A dental appliance can be helpful to prevent clenching and grinding. But only get one fitted for you by a specialist, as the drug-store versions often make jaw pain worse.
• There is a technique for ‘recapturing’ a disc that is popping out that you can find in Dr. Russek’s handout.
• Dr. Russek also has a recorded lecture about TMJ problems and headaches: HSD 108.

Here is a breathing technique to support stress relief to help manage TMJ pain

FAQ

Is TMJ related to EDS?

People with EDS are definitely more vulnerable to TMD for several reasons. Excessive jaw range places stress on the joint and muscles, and pulls the disc out of place. Poor proprioception (body awareness) and motor control of the jaw muscles stresses the joint. Also, cervical instability can aggravate the TMJ.

What is the 3 finger test for TMJ?

This is a quick test to assess how wide your jaw can open. Normally, a person can fit 3 stacked fingers between the upper and lower teeth when open. Hypermobile patients can often open wider. People with TMD often cannot open as much as normal, or might not open straight.

Leslie Russek

Leslie Russek, PT, DPT, PhD, OCS a professor emeritus at Clarkson University. She is a physical therapist, researcher, and hypermobility specialist. Her research focus includes hEDS/HSD, headaches, and fibromyalgia. Dr. Russek is the scientific advisor of The Zebra Club and a frequent presenter at Zebra Club meet-ups.

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