TMJ, Joint Hypermobility Syndrome and Ehlers-Danlos syndrome.

Ross A. Hauser, MD

While we see many patients of different ages, we often will see younger patients who have been diagnosed with Hypermobile type Ehlers-Danlos syndrome (hEDS) or general joint hypermobility (GJH). Among their many loose and painful joint challenges are the problems with their jaw or their temporomandibular joint, (TMJ). Once symptoms have occurred or problems have developed during routine dental work, the diagnosis of temporomandibular disorders (TMD), is now confirmed and added to their sometimes long list of joint instability challenges.

While many young people with joint hypermobility TMD will have great success with “splint therapy,” anti-inflammatories, and physical therapy that helps them talk and chew in such a way as not to put a strain on the TMJ, these treatments treat symptoms. They do not address the cause or origins of the TMJ instability causing this young person their problems. In this article, we will present information on treatments that may offer long-term solutions to the problems of TMJ ligament laxity, looseness, and weakness that prevent them from holding the jaw in a more natural position.

We have a very extensive article The evidence for TMJ injections into the jaw and cervical spine, that explains these treatments. This article will summarize the key findings presented in that article.

Part 1: The emotional impact of TMJ and hEDS

“I was cracking more than everyone else’: Young adults’ daily life experiences of hypermobility and jaw disorders.”

If you are a parent of a teenager who has been battling problems with TMJ/TMD, then you do not need to be reminded that your teenager has been going through some emotional challenges trying to deal with their problems. In our many years of helping these patients, we hear the same stories, “no one believes them,” and “Doctors keep referring my teenager to dentists even though I tell them it all started with a dental visit.” The reason that there are these stories is that these teenagers feel that no one is really helping them.

When a parent of a younger patient, or the younger patient themselves contacts our office, they usually do not report a single problem of TMJ. Emails we receive will typically tell us about TMJ and tinnitus, anxiety, and digestive issues. Some people will report to us that they, in addition to many symptoms, have also been to the emergency room because on occasion they cannot swallow. When an MRI was taken, their doctors advised them: “There is nothing wrong with you that we can see.”

Study: The everyday experiences of younger patients (18-22 years old) with TMJ – “a feeling of a lack of support from general medical and dental care providers.”

Doctors in Sweden looked at the everyday experiences of younger patients (18-22 years old) who were diagnosed with general joint hypermobility (GJH) and temporomandibular disorders (TMD). This January 2020 study (1) was published in the European Journal of Oral Sciences.

When the researchers asked the patients in their study to describe their experiences, the 9 young adults’ stories centered on experiences of:

• complex symptoms,
• awkward jaw function and joint noises,
• feeling different,
• and a lack of support from general medical and dental care providers.

The title of this paper suggests that TMD in these young patients takes an emotional toll. What was the title of this paper? ‘I was cracking more than everyone else’: Young adults’ daily life experiences of hypermobility and jaw disorders.

Psychosocial impact of TMJ and Ehlers-Danlos syndrome

In a January 2020 study, (2) doctors suggested not only functional and physical impacts of Temporomandibular Disorders in adolescents and young adults but also psychosocial ones. In their research, these doctors suggested that TMDs impacted the physical and psychosocial well-being of adolescents and young adults. Further, “significant perceived disabilities observed have to be attributed to the physical pain associated with TMDs.”

Dancers and Gymnasts with General Joint Hypermobility

An August 2023 study (3) from The University of Edinburgh found that in studies on dancers and gymnasts with general joint hypermobility, the dancers and gymnasts of the studies reported fewer back problems, better school functioning, better sleep/rest, and less fatigue and pain in comparison to non-dancers with general joint hypermobility. However, in adulthood, studies comparing the well-being and functioning of dancer and non-dancer adults with general joint hypermobility, found that while dancers had “higher muscle strength and performed better on functional tests, they reported more fatigue and pain than non-dancers. Pain and fatigue might increase in those with general joint hypermobility later in life, accounting for such discrepancies. . . Dancers and gymnasts also reported the lowest quality of life, a finding compatible with results in adults.”

Searching for criteria for Ehlers-Danlos Syndrome (hEDS) in Adolescents because standard care patients do not get better. Not to say anything about the toil on the family and the patient looking for answers

Doctors at Boston’s Children’s Hospital and Harvard University have published their research in the February 2017 edition of the Journal of Pediatrics (4) which describes the typical experience of an adolescent with Ehlers-Danlos Syndrome type syndromes:

The researchers examined the medical records of 205 patients with EDS (ages 6-19 years) seen in sports medicine or orthopedic clinics at a large pediatric hospital over a 5-year period.

• Female (147) and male (57) patients were identified (mean age 12.7 years old).
• The most common EDS subtype (55.6%) was the hypermobility type.
• Patients had between 1 and 69 visits (average 4), and 764 diagnoses were recorded.
  • most commonly laxity/instability,
  • pain,
  • subluxation,
  • and scoliosis/spinal asymmetry.
• Nearly one-half of patients (46.8%) received a general diagnosis of pain because no more specific cause was identified.
  • in addition to 8.3% who were diagnosed with chronic pain syndrome.

Comment: As above, we have a patient with a lot of health challenges. The many doctors and many tests they had come up with no answers.  Referring to the Norwegian study above:  “This may indicate one of the reasons why prognosis for these patients is poor.” In other words, patients do not get better. Not to say anything about the toil on the family and patient.

hEDS and TMJ: Does the patient have a disc or appliance problem, a psychiatric problem, or a ligament problem?

For the parent or young patient who has been suffering from TMJ problems with no apparent relief in sight, at some point, they come to the realization that their TMJ problems are challenges far beyond a disc or a TMJ appliance problem. When this person then has a failed TMJ surgery, these challenges they face become that much greater, and their jaw problem that started out as an annoyance has turned into years of searching for anything that will help them with the new cascade of symptoms they suffer from beyond opening their mouths without pain.

TMJ surgery and appliances do help people. Many people have benefited from these treatments to the point of complete symptom alleviation. But these are not the patients we see in our office. We see the people with TMJ surgery and appliances did not help. These are people, perhaps like yourself or your child, whose TMJ has turned into a problem of headaches, neck pain, difficulty swallowing, and dizziness. For some of these people, their doctors may have found it inconceivable that they did not respond to the treatments they offered and may recommend a psychiatric examination. Generally speaking, if you are searching for a cure for your problem, your problem is not “all in your head.”

Part 2: Diagnosis and understanding of TMJ within Ehlers-Danlos syndrome

A long history of TMJ and Ehlers-Danlos syndrome. So why are diagnosis and treatment difficult for some to come by? Understanding TMJ laxity

It should be pointed out that an association between Ehlers-Danlos syndrome and temporomandibular joint disorders was made decades ago. In 1965, yes 58 years ago, a paper titled: “A case of Ehlers-Danlos syndrome presenting with recurrent dislocation of the temporomandibular joint,” was published in the British Journal of Oral Surgery. (5) In this paper an understanding of abnormal collagen production was discussed.

Abnormal collagen is the hallmark of Ehlers-Danlos syndrome and disorders of the connective tissue. In cases of TMJ, abnormal collagen is seen as a problem with the ligaments of the skull and the jaw’s ability to hold the jaw in place.

 “I am double jointed . . . I have Ehlers-Danlos syndrome.”

In 1985, Daniel E. Myers, DDS, MS at the University of Maryland School of Dentistry reported a case that 38 years later will sound very familiar to the 2023 reader. This case was published in the American Dental Society of Anesthesiology’s journal Anesthesia Progress. (6)

Here Dr. Myers reported on a 21-year-old woman who came to the Facial Pain Center at the University of Maryland Dental School complaining of pain and intermittent clicking in her right TMJ. The problem started approximately 6 months previous and started with eating a sandwich. When the patient was asked the routine question “Do you have problems in any other joints in your body?” The patient responded “I am double-jointed. . . I have Ehlers-Danlos syndrome.”

Dr. Myers went on to suggest that “the symptoms of TMJ problems in EDS patients are similar to those in other TMJ patients but certain features of treatment are different. First, the range of mandibular opening must be restricted by prescription even more so than in other patients.

• That is, activities such as eating large sandwiches, opera singing, and lengthy dental appointments requiring extreme opening must be strictly avoided.
• Yawning must be controlled by gentle pressure on the chin to avoid excessive opening. Mandibular exercises must be moderate to avoid excessive stress on abnormal retrodiscal collagen fibers.
• Splint therapy may require more time than usual to achieve results.
• Finally, oral surgical procedures, especially to repair retrodiscal tissues, are contraindicated because of the poor healing of tissues and the unusual scar formation. The necessity of a thorough medical history, physical examination of limb joints, and knowledge of collagen disorders and arthritis in treating TMJ patients cannot be overemphasized. Patients suspected of having EDS should be referred to a rheumatologist and geneticist.”

Research update: A September 2022 paper in the Journal of Oral Rehabilitation (7) found single symptoms and signs of TMJ disorders occurred significantly more often in hEDS, and maximum mouth opening was significantly smaller in hEDS compared to controls. The diagnosis of myalgia, myofascial pain with referral, arthralgia, headache attributed to TMD, disc displacement disorders, and degenerative joint disease occurred significantly more often in hEDS compared to controls.

Medicine struggles for a better understanding of the defective production of collagen and reduced musculoskeletal functioning by symptoms of joint laxity and frequent dislocations eventually leading to disability

The papers listed above and this paper published in June 2016 in the medical journal Disability and Rehabilitation (8) suggest that medical research seems to be stuck. Here is a reiteration of the problems expressed in the 2015 and 2017 studies listed above. This research comes from Appalachian State University whose doctors sought to help provide answers for patients. Here are their bullet points.

• “Improved healthcare provider knowledge of Ehlers-Danlos Syndrome is needed, and additional research on the co-occurring diagnoses with EDS may assist in comprehensive pain management for Ehlers-Danlos Syndrome patients.
• Ehlers-Danlos Syndrome is a group of connective tissue disorders associated with defective production of collagen, which can dramatically reduce musculoskeletal functioning by symptoms of joint laxity and frequent dislocations eventually leading to disability.
• Respondents to an online survey reported having to seek out confirmation of their Ehlers-Danlos Syndrome diagnosis with multiple physicians, which implies the difficulty many people with Ehlers-Danlos Syndrome face when trying to gain access to appropriate treatment.”

Research update: An August 2023 paper in the Journal of Oral and Maxillofacial Surgery (9) investigated whether there is an association between recurrent temporomandibular joint dislocation and generalized joint hypermobility and/or benign joint hypermobility syndrome. A total of 68 participants were included, of whom 34 patients presented with recurrent TMJ dislocations compared with a control population of 34. The average age of this group was about 31 years old. More than 70% were women. Of the patients who had chronic dislocation  16 (47.0%) patients had a Beighton score of 4 or higher signifying an association between recurrent TMJ dislocation and generalized joint hypermobility. An association with benign joint hypermobility syndrome was also found. The researchers recommended: “Early detection of these disorders in patients suffering from recurrent TMJ dislocation may help identify individuals at increased risk for joint instabilities and allow the implementation of appropriate preventive management strategies.”

Nine out of 10 patients with TMJ are diagnosed patients with Joint Hypermobility Syndrome – pain does not come from degenerated TMJ discs.

We are going to make some fascinating connections here to show that TMJ and jaw-related pain are much more than TMJ disc degeneration in many patients.

• In this first study, research shows that it is not only a problem of the TMJ disc but also a problem of jaw instability.

Like any joint, excessive movement in the Temporomandibular joint and/or chronic subluxation/dislocations of the Temporomandibular is caused by weakness of the connective tissue that holds the joint in place. In the jaw important connective tissue includes the Temporomandibular ligament, the stylomandibular ligament, and the sphenomandibular ligament which provides limitation of mandibular movements.

In a late 2015 publication date, researchers published findings in the journal Clinical Oral Investigations (10) on the TMJ/TMD –  Joint Hypermobility Syndrome connection. What is so fascinating about this study is that in patients who had TMJ and were found to have Joint Hypermobility Syndrome, 9.52% of JHS patients have disc disorders and 90.48% of JHS patients do not. 9 out of 10 patients with TMJ are diagnosed patients with Joint Hypermobility Syndrome – pain does not come from degenerated TMJ discs.

• So what does this mean to you? The source of your TMJ pain does not need to involve a displaced disc it can be a weakness of the jaw/TMJ ligaments. Any treatment should involve a determination of ligament weakness.

TMJ is more than a physical problem related to the jaw

• What does this mean? As pointed out by researchers in the medical journal European Psychiatry: The Journal of the Association of European Psychiatrists, (11) problems of jaw pain (TMJ) may be an indication of a body-wide problem with loose joints and further, joint hypermobility syndrome and TMJ may manifest themselves as a potential link to the neural bases of anxiety and related somatic symptoms (pain that causes major emotional distress).
• What does this mean? As doctors writing in the Journal of Oral and Facial Pain and Headache point out TMJ is more than a physical problem related to the jaw. (12)

Many dentists and oral surgeons believe that TMJ cannot be cured and the best hope is for temporary symptom relief

The problem with any of these approaches is that they do not repair the weakened TMJ ligament and, thus, do not alleviate the chronic pain that people with this condition experience. Thus, most dentists and oral surgeons believe that TMJ cannot be cured and the best hope is for temporary symptom relief. What we have found in nearly three decades of patient observation is if you do not look for tendon attachment and ligament damage in the jaw and cervical neck areas, the patient’s TMJ/TMD-related pain will be considered difficult to treat and the treatments will move onto symptom suppression, not disorder healing.

Part 3 What is the treatment for TMJ-related Ehlers-Danlos syndrome?

Orthognathic Surgery

Doctors at the Department of Plastic and Reconstructive Surgery, Cleveland Clinic Foundation presented findings on the use of Orthognathic Surgery in Ehlers-Danlos Syndrome in the January 2023 issue of The Cleft palate-craniofacial journal. (13) They write: ‘”Historically, patients with EDS and TMJ disorders are considered inappropriate surgical candidates due to a higher risk of delayed wound healing, increased risk for uncontrolled post-surgical bleeding, and unsubstantiated outcomes in regards to elective orthognathic surgery.” However, the researchers of this study not that the medical literature contains very little  on the use of orthognathic surgery and maxillary-mandibular advancement in patients with EDS.

The doctors go on to present this case history: A 47 year old woman with a history of hypermobile EDS who presented with Angle Class II malocclusion, Class II skeletal pattern, and clockwise rotation of the occlusal plane associated with pain at the bilateral TMJs. “She underwent maxillary-mandibular advancement with counterclockwise rotation of the occlusal plane and genioplasty (chin altering procedure). The surgery was without complications, and at 22 months follow up, the patient healed uneventfully with improvement of pain and range of motion.” The doctors concluded that this “case report demonstrates that with diligent patient selection, orthognathic surgery in patients with EDS can be safe and effective and should not be an absolute contraindication.”

In many of the Ehlers-Danlos Syndrome patients we see, there is a history of rheumatologist and geneticist visits and a journey of years of bouncing between clinician and clinic, from doctor to alternative practitioner, from self-help guideline to self-help guideline still looking for answers. It is especially difficult when the patient is a teenager or a young man or woman in their late teens or early twenties. What these young patients know is that they have hEDS and they have TMJ as well as other symptoms. They know that their joints are loose but very few treatments, including surgery, seem to help them. In our practice, we explore the problems of ligament laxity. The ligaments of the TMJ are overstretched and loose. Let’s get to the evidence to help support the idea that ligament laxity is the root cause of the problem.

Research: Overall expert consensus indicates that pain medications are often not effective in the long-term treatment of TMJ-related Ehlers-Danlos syndrome

The idea that Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders can be managed long-term with pain medications, anti-inflammatories, and opioids is being discredited. These pain medications can be beneficial in the short term, and detrimental in the long term.

Let’s start with the 2017 treatment guidelines published in a paper in the American Journal of Medical Genetics. Part C, Seminars in Medical Genetics (13). This information was presented for dentists to understand to identify EDS in the TMJ patient.

” . . . while proper diagnosis and precise treatment of temporomandibular disorder are always complex, it is far more so in the EDS patient. Even practitioners highly trained in the area of temporomandibular disorder can face unexpected challenges in diagnosing and treating an EDS patient if they do not have an in-depth understanding of EDS. Some symptoms are obvious to the practitioner familiar with the disorder, and some are very subtle. Yet, while proper diagnosis and precise treatment of temporomandibular disorder are always complex, it is far more so in the EDS patient. Even practitioners highly trained in the area of TMD can face unexpected challenges in diagnosing and treating an EDS patient if they do not have an in-depth understanding of EDS.”

“Assuming TMJ hypermobility and generalized joint hypermobility increase the prevalence of the temporomandibular disorder, all EDS patients should be treated prophylactically (Prevention of TMJ). Prevention of TMJ injury should be paramount. Postural alignment as well as the upper back and cervical issues need to be addressed. Lifestyle changes can include alteration of chewing patterns, diet, stress reduction techniques, and management of physical activities.”

This paper then discusses various preventative treatment options to prevent the worsening of TMJ symptoms in EDS patients.

• Deep heat
• Cold laser (Superpulsed Low-Level Laser Therapy)
• Friction muscle massage
• Custom splints to stabilize the TMD
• Prolotherapy
• Medications
• Botulinum toxin
• Physical therapy

These treatments will be discussed below. In our article The evidence and comparisons of TMJ injection treatments we also add information on:

• Corticosteroid injections
• Hyaluronic acid injections
• PRP or Platelet Rich Plasma Therapy
• Cell therapy or Bone Marrow Aspirate Concentrate injection.

What pain medications should be offered for TMJ and Ehlers-Danlos Syndromes?

In November 2018, a review of patient outcomes and the medical research surrounding the management of pain was published in the medical journal Medicine (14) by a team of Canadian researchers. This review is a guide to helping other doctors understand the pain challenges of Ehlers-Danlos Syndromes patients.

What type of pain medications should be offered?

• Tylenol and nonsteroidal anti-inflammatory medications (NSAIDs) are suggested for mild to moderate pain. However, the use of NSAIDs is limited due to poor tolerance secondary to comorbid gastrointestinal issues in EDS patients.
• Opioids may be an option, but only for a short duration. There is good evidence that long-term treatment with opiates is not a viable option and may lead to central pain sensitization (heightened pain sensation). Tramadol could be considered as an alternative.
• Steroids have been found to be helpful in the acute exacerbation of joint pains. However, care must be taken to avoid long-term use to prevent steroid-related side effects.
• For nerve-related pain tricyclic antidepressants, anticonvulsants, serotonin, and norepinephrine reuptake inhibitors, and other antidepressants may be used with caution given an increased risk of dysautonomia in EDS.
• Muscle relaxants such as baclofen can be helpful for painful muscle spasms but are discouraged for routine use due to the theoretical risk of increasing joint instability and consequently worsening pain.
• No evidence exists regarding the use of medical marijuana in the treatment of EDS patients. Anecdotally it works better than opioids.
• Overall expert consensus indicates that pharmacological treatments are often not effective in long-term treatment.

In 2013, Caring Medical research led by this author (Ross Hauser, MD), published in the Journal of Prolotherapy (15) made these same points and added that many of these medicines accelerate joint destruction. (16)

“Pain management is a critical element in the treatment of hypermobility. While physical therapy and exercise may lend some degree of pain relief, individuals with hypermobility often require additional measures to manage joint pain. Patients with hypermobility disorders are often prescribed large doses of pain medication, such as acetaminophen, muscle relaxants, NSAIDs, and antidepressants; over time, stronger medications (including narcotics) and higher doses may be required to deal with the effects of chronic pain.

These medications are helpful in the management of symptoms that prohibit patients from carrying out certain activities, but they have no effect in treating the underlying pathology of hypermobility and, in some cases, they may actually have a negative effect on joint tissues.

Non-steroidal anti-inflammatory drugs (NSAIDs) are one class of medications commonly prescribed for joint pain but can have a combative effect on joint health, due to their role in inhibiting the synthesis of collagen and articular cartilage synthesis. This can cause not only weakness in ligaments, but also in cartilage, tendon, and bone cells, contributing to an overall weakening of the joint.”

Physical therapy

An August 2021 examination of the benefits of physical therapy in patients with TMJ and Hypermobility Joint Syndrome was published in the Journal of Clinical Medicine. (17) Here is this study’s findings:

• The study involved 322 patients with symptoms of TMJ and Hypermobility Joint Syndrome. These patients were divided into two groups. People with TMJ and another group with Hypermobility Joint Syndrome + TMD.
• These patients completed 3-week physiotherapy management.
• Before and after physiotherapy, the myofascial pain severity on the Numeric Pain Rating Scale, linear measurement of maximum mouth opening, and opening pattern were assessed.
• A statistically significant improvement was obtained in decreasing myofascial pain in both groups. Coordination of mandibular movements was achieved in both groups.

Summary and contact us. Can we help you?

We hope you found this article informative and that it helped answer many of the questions you may have surrounding TMJ issues.  If you would like to get more information specific to your challenges please email us: Get help and information from our Caring Medical staff

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Continue reading

The evidence and comparisons of TMJ injection treatments and conservative care treatments

The many symptoms of TMJ beyond the jaw: Neck muscle spasms, myofascial pain, breathing problems, digestive disorders and dizziness

TMJ and Tinnitus: Should we explore the ligament chain from the cervical spine through the neck to the jaw to the ear?

Ernest Syndrome | Is this the answer to unresolved TMJ, facial, ear and throat pain?

References

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This page was updated August 29, 2023

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• Surgery
• NSAIDs
• Cortisone Shots
• R.I.C.E.