Ehlers Danlos Syndrome, the tongue and Orofacial Myofunctional Therapy

Associated Conditions EDS Hypermobility

by Jeannie Di Bon, February 3rd, 2025

Estimated reading time: 5 minutesAs a teenager, I had terrible issues with my jaw – in particular, the temporomandibular joint (TMJ). It would lock overnight and would be extremely painful to open it. I probably didn’t have the right movement patterns and balance of my facial and jaw muscles.

Over the years, the headaches and migraines developed and I was sent to the dental hospital because it was painful to eat. I was told I needed to relax and do something like Pilates! I didn’t have the heart to tell them I was a newly qualified Pilates teacher.

It clearly wasn’t just about relaxation techniques. I was doing plenty of that, and while these can be extremely helpful, there was also something mechanical going on that no one ever picked up on. I think the way I use my mouth for eating, swallowing, and tongue position all played a role, not to mention ear pain and tinnitus!

I had been hearing about this technique called orofacial myofunctional therapy from clients and Zebra Club members based in the United States. I was curious to find out more about it as they seemed to be having great results. I was fortunate to be introduced to Anna van Piggelen in the UK by a fellow healthcare professional with EDS.

She kindly gave me treatment and I can see how beneficial this could be to many people with painful necks and jaws with possible dysfunctional muscle patterns in the mouth, face, and throat. I wanted to help share this newfound knowledge and asked Anna to share her insights and expertise with us in this blog. Of course, please do seek advice from a medical professional if you are experiencing any of the symptoms discussed here.

I only wish treatments and experts like Anna were around when I was growing up with an undiagnosed hypermobility condition!

What is orofacial myofunctional therapy?

Orofacial Myofunctional Therapy (OMT) is an exercise-based therapy designed to retrain habits involving the muscles of the face and mouth. The primary goal is to improve functions like breathing and swallowing while eliminating improper habits, including:

  • Overusing facial muscles
  • Snoring, mouth breathing, and sleep apnea
  • Grinding and clenching
  • Tongue thrusting

Key Components of OMT:

  1. Promote Nasal Breathing: Encourages proper nasal breathing to enhance airflow and reduce mouth breathing.
  2. Correct Swallow Pattern: Develops a correct swallowing technique to prevent overuse of facial muscles and reduce strain on the TMJ.
  3. Good Lip Seal: Strengthens the orbicularis oris muscle (around the lips) to maintain a strong lip seal, preventing mouth breathing.
  4. Correct Tongue Posture: Ensures the tongue rests properly on the roof of the mouth, which supports overall oral and maxillofacial (jaw and facial) health.
Ana demonstrates a myofunctional therapy exercise to strengthen the muscles around the mouth

What is the proper position of the tongue?

The tongue should rest lightly on the roof of the mouth, with the tip touching the small ridge just behind the front, top teeth. In this position, the airway is most open, allowing for maximum oxygen intake when breathing.

You can test this by alternating between breathing through your nose with your tongue on the floor of your mouth and then at the top—notice which position allows for more air?

Most mouth breathers tend to have a low resting tongue position, creating tension in the mouth and contributing to pain and aches in the jaw area. When the tongue rests at the top, it indicates sufficient strength to maintain this position, which plays a crucial role in proper swallowing technique. Ideally, the tongue should act like a wave against the roof of the mouth to push liquids and food down. However, many people use a sucking technique that overuses facial muscles, causing tension in the cheeks and contributing to jaw pain.

To check your technique, look in a mirror as you swallow – do your cheeks dimple around your mouth or do your lips purse? If so, it’s likely that your tongue isn’t working hard enough!

Anna demonstrates the proper position of the tongue

Tongue Tie and Jaw pain

The lingual frenulum is the line under your tongue that tethers it to the base of the tongue at the bottom of the mouth. When this line is shortened, it can result in a condition known as tongue tie, which can create problems in being able to keep your tongue to the roof of the mouth.

Here are some signs and implications of tongue tie:

  1. Self-Test for Tongue Tie:
    • Open your mouth widely.
    • Put the tip of your tongue to the roof of your mouth, just behind the front top teeth.
    • If your mouth has to close to reach this position, there’s a good chance you have a tongue tie (this is just one simple test and often requires other tests)
  2. Potential Symptoms of Tongue Tie:
    • Mouth breathing
    • Snoring
    • Altered facial development
    • Pain in the jaw
    • Poor swallow technique
    • Grinding of teeth

Tongue ties are just as common in adults as they are in children, often because many individuals are not properly assessed during childhood. There are procedures available to release tongue ties using a laser, which are relatively non-invasive compared to traditional surgery and incisions.

This can allow the tongue to move more freely, but comprehensive assessments are necessary to determine if the procedure will make a significant structural difference. Myofunctional therapy before and after the release makes a huge difference in recovery and range of movement.

Can myofunctional therapy help with TMJ pain?

Orofacial Myofunctional Therapy (OMT) can indirectly help with jaw pain by creating support in the tissues around it. Strengthening the tongue and lips and relaxing facial muscles through correct swallowing techniques can take pressure off the temporomandibular joint (TMJ).

Often, learning these techniques helps individuals stop clenching, which is a common issue in people with hypermobility. Additionally, hands-on therapy can work on the muscles within the mouth that assist in opening and closing the jaw.

Stabilizing the neck from a different angle

Due to its proximity to the neck, the jaw can significantly affect this area. Clenching and grinding the teeth is common in individuals with Ehlers-Danlos Syndrome (EDS) as a way of creating support in mobile areas. It is also a method of self-soothing an overworked nervous system, which can create tension in the neck and behind the base of the skull. OMT can help stabilize the jaw and its surrounding areas, which can indirectly aid in upper cervical instability (UCI/CCI).

What kind of exercises do you do in myofunctional therapy?

Some exercises in myofunctional therapy use small tools, while others simply involve your muscles. Most exercises are small movements, making them useful for EDS patients who find overworking areas difficult. Exercises may focus on the muscles surrounding the lips, tongue mobility and strength, correct swallowing techniques, and relaxing facial muscles.

A tailored approach is necessary; a slower and more gentle approach works best for EDS patients even though the exercises are small—they are still hard work for certain areas!

Below are some examples of myofunctional therapy exercises.

Anna demonstrates a myofunctional therapy exercise

How do I find a good myofunctional therapist?

Finding a good myofunctional therapist can be challenging as it is a much bigger therapy field in the United States but is becoming more popular in the UK.

Firstly, consider the proximity to you; while online sessions are possible, seeing someone in person at least occasionally is beneficial.

Secondly, ensure you get along with your therapist and that their style of guiding and explaining things works for you.

Working with a therapist with knowledge and empathy towards EDS patients is helpful as some exercises will not be suitable and specific ones will need to be selected for the individual taking into account how that patient is coping at that time.

For members of The Zebra Club, Anna will be joining us in June for a Member’s Meet-up to share her experience with EDS/HSD and myofunctional therapy.

Have you tried myofunctional therapy? Let us know about it in the comments!

 

FAQ

What is Orofacial Myofunctional Therapy?

An exercise-based therapy to retrain muscle patterns in the face and mouth area, with a focus on correct swallowing, good tongue posture, lip seal, and nasal breathing.

What is the Proper Resting Position of the Tongue?

The proper resting position of the tongue is in the roof of the mouth, with approximately ⅔ lightly pressing against the palate. The tip of the tongue should be behind the top front teeth on the slight ridge of the palate.

Is Myofunctional Therapy Good for Ehlers-Danlos Syndrome?

Myofunctional therapy is beneficial for EDS patients. The exercises are small and require little energy but start to promote stability in this area. Just as you would strengthen your quadriceps for knee stability, you can strengthen the muscles in the facial area to help with jaw stability.

2 Comments

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Christy - 4th February 2025

I’m in the US. I have Bruxism, tongue thrust, an open bite, and mild sleep apnea. I wanted a solution for the Bruxism because my older sister and father have all implants or crowns for their back teeth, due to all the pressure of Bruxism; and I was on my way with one crown in each quadrant. I’ve worn a bite guard since I was a teenager, but that only protects the enamel. It doesn’t protect the teeth from all the pressure.

In 2021 (at age 42) I did the Vivos system to widen the upper and lower jaw. Then did Invisiline to close the open bite. Had my tongue tie clipped. And did 8 months of online OMT with a Vivos therapist. It took about two to three years and cost about $13,000. Here are my thoughts.

According to dental CT, I widened my airway by 19%. My sleep was marginally improved. I still grind my teeth and tongue thrust, but I definitely do it less than before. The most significant improvement was an unexpected one. Clenching jaw muscles can cause dysfunction in the traps and rhomboids; I had huge knots in my traps since I was a teenager. They did not respond to weekly massages, chiropractic work, physical therapy – nothing. They were big, hard, and I had no feeling in that area. You could press as hard as possible and I would feel nothing. The nerves had turned off. They were throwing off all the other muscles in the area and causing a lot of disfunction. But after the Vivos treatment, they reduced by about 60%.

In 2023, I was diagnosed with hyper mobile Elhers Danlos syndrome and began physical therapy with a specialist. She helped reduce the knots another 20% and taught me proper head and neck placement. Now my chiropractor says the knots are just “normal person bad” not “OH MY GOD Bad”.

Out of all the interventions I did, I would say the ONLINE OTM was the least effective. I think it should’ve been done in person, and with someone who understands head and neck placement and how everything is tied together. I would’ve made more progress much faster. I was six months into OTM before we realized that yes, the tip of my tongue was in the right place, but the middle of my tongue was not touching the roof of my mouth because my pallet is so high and arched! That is something that should’ve been caught way earlier. OTM therapy needs to take into account the entire body, not just the mouth; unfortunately I was again a victim of a siloed medical system.

About a year ago, I found a medical massage therapist who is also a physical therapist, and he’s made even further progress with my tongue, scalenes, and hyoid area. It’s an area of my body that I constantly have to be conscious of, and when I’m doing relaxation classes, it’s an area I have to focus on to consciously relax and put everything in the right place. It makes a huge difference in pain, my ability to talk or sing for a long time without pain, and headaches.

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    Jeannie Di Bon - 6th February 2025

    Thank you so much for taking the time to share your personal experience. I’m so glad you have found a solution that is working for you.