Ehlers-Danlos syndrome, Joint hypermobility, and temporomandibular disorders in younger patients

Ross A. Hauser, MD

Often we 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 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.

Article outline 

“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:

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 a 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.”

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 57 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. (3)

Where is the laxity?

In 1985, Daniel E. Myers, DDS, MS at the University of Maryland School of Dentistry reported a case that 37 years later will sound very familiar to the 2022 reader. This case was published in the American Dental Society of Anesthesiology’s journal Anesthesia Progress. (4)

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 previously 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.

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

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 sill 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.

hEDS and TMJ: Does the patient have a disc or appliance problem or 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.”

Introduction video: Unresolved chronic TMJ pain may be coming from your neck

Danielle R. Steilen-Matias, MMS, PA-C

Summary highlights:

At 1:53 of the video, the question is asked: “How do you determine if neck instability is involved in a case of chronic TMJ pain?”

At 2:47 of the video, the question is asked: “How many Prolotherapy treatments are needed to resolve TMJ Pain”

The evidence and comparisons of TMJ injection treatments

We often see patients with varying degrees of, and medical histories of, TMJ syndrome or TMD (Temporomandibular joint dysfunction). They tell us about how their TMJ developed, whether it was from extensive dental work, a traumatic injury suffered in an accident, or other reasons such as a history of teeth grinding that has led to degenerative joint disease of the jaw. They may also tell us about frequent jaw dislocations and problems with their neck. They also tell us about a lot of treatments that did not work for them. In this article, we will discuss these treatments and the possible solutions regenerative medicine injections may offer.

TMJ is a problem. The medical community is responding by pumping out a lot of research. Let’s look at some of these new studies to see what is benefiting patients and what is not.

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.

In November 2018, a review of patient outcomes and the medical research surrounding the management of pain was published in the medical journal Medicine (5) 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?

In 2013, Caring Medical research led by Ross Hauser, MD, published in the Journal of Prolotherapy (6) made these same points and added that many of these medicines accelerate joint destruction. (7)

“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.”

Medicine struggles for a better understanding of 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.

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 (9) 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 clinic at a large pediatric hospital over a 5-year period.

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.

The steroid injection made the TMJ pain worse

Steroids / Anti-inflammatories – research questions effectiveness and worthiness in helping TMJ patients.

A recent paper in the Journal of Oral Rehabilitation, (10) looked at steroid injection, specifically Methylprednisolone as a means to help alleviate TMJ patient symptoms. In this study, the researchers looked at inflammation as a symptom problem in the TMJ. Clearly, they hypothesized, that an anti-inflammatory would help with the inflammatory pain the patient was suffering from. What they found was the exact opposite, the steroid injection made the pain worse.

Hyaluronic acid injections and steroid injection

Researchers at the world-renowned Semmelweis University’s Faculty of Dentistry (11) published their findings comparing hyaluronic acid injections and steroid injections.

They found:

We have looked at Hyaluronic injections at length in the treatment of various joint pains The injections are a lubricating gel designed to help with pain-free movement in the joint. We have examined research on these injections and wrote of our findings. In our article on knee injections, Are Hyaluronic injections low-value health care? -we wrote “It should be noted that we see many patients who have tried hyaluronic acid injections. These injections have worked for these people in the short term. These patients are now in our office because the short-term has not transpired to the long-term and now  a different treatment approach needs to be undertaken.”

Steroids, Hyaluronic acid injections, and Platelet Rich Plasma Therapy

A June 2019 study published in The Journal of Craniofacial Surgery (12) evaluated the use of intra-articular corticosteroids, hyaluronic acid, and platelet-rich plasma in patients with temporomandibular joint (TMJ) pain and clinically diagnosed with TMJ-osteoarthritis. They found that intra-articular PRP injections decreased TMJ palpation pain more effectively compared with the hyaluronic acid and corticosteroid groups.

Non-surgical conservative treatment methods for TMJ

A comparison of the outcomes of four minimally invasive treatment methods for anterior disc displacement of the temporomandibular joint. Why didn’t they help some people?

The above heading is taken in part from the title of a paper published in the International Journal of Oral and Maxillofacial Surgery. (13)

As the researchers point out, the purpose of this study was to compare the effectiveness of four non-surgical conservative treatment methods for temporomandibular displacement disorders. We are going to examine the phenomena of effusion and swelling in this study and compare it to another new study.

Patients were divided into four groups according to the treatment method:

Magnetic resonance imaging (MRI) was performed before treatment and at the 1-month follow-up. Patients were followed up after treatment for 6 months.

Note: So all these treatments worked well, except in our opinion the very ominous problem of effusion.

Symptom suppression was successful, BUT the underlying problem is still there

Back to the research and why we consider this ominous.

A positive correlation was found between pain and TMJ effusion. A significant positive relationship was also found between internal derangement (structural problems) and effusion.

It was determined that the effusion demonstrated on MRI was associated with pain. Although the symptoms improved after treatment, joint effusion did not show any decrease in the 1-month follow-up MRI.

In other words, the underlying problem was still there and the symptom relief could only be temporary

The problem of fluid buildup in TMJ patients, a jaw joint trying to stabilize by swelling is a chronic and long-term problem of the degenerative joint disease

In a 2017 study, doctors publishing in The Journal of Headache and Pain (14) made the observation that when patients with TMJ and fatigue clenched their teeth, already elevated levels of inflammatory markers (inflammation) increased in the jaw muscle, BUT, there was no correlation between this increased inflammation and the jaw muscle pain and fatigue the patients were experiencing.

What does this mean?

According to the researchers, “This implies that subclinical muscle inflammation may be involved in TMD myalgia pathophysiology (The process of TMD), but that there is no direct cause-relation between inflammation and pain.”

What does this mean?

TMJ and Joint Hypermobility Syndrome. This could be you all along and undiagnosed.

9 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.

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 include 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 (15) on the TMJ/TMD –  Joint Hypermobility Syndrome connection.

What is Joint Hypermobility Syndrome?

It is a common musculoskeletal disorder that makes your joints too flexible. For some people, this is very advantageous, especially in gymnastics, dance, and swimming. For others, it leads to chronic dislocations.

The research aimed to investigate the risk factors of temporomandibular disorders, including disc or non-disc-related disorders, and Joint Hypermobility Syndrome retrospectively and to analyze the association between the two conditions.

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.

TMJ is more than a physical problem related to the jaw

In 2007, researchers here at Caring Medical published our findings in the medical journal Practical Pain Management that “Many of the subjective symptoms of pain, stiffness, and crunching sensation in patients with TMJ dysfunction were reduced greater than 50% in 92% of the Prolotherapy patients.”(18) We will examine this research below in greater detail as we explain the treatment of Prolotherapy.

TMJ is a cause of cervical neck instability and poor posture

In our article on Cervicogenic dysphagia, swallowing difficulties as being caused by problems in the neck and brain, we explored research that noted that TMJ patients and cervical neck instability patients have difficulties in swallowing. TMJ and neck problems have long been linked together, however, it is not often that a patient will report to us that their previous health care providers made this link and offered treatments addressing both concerns. In the following research the links and the treatments for both TMJ and cervical neck instability point to a problem in the neck.

In the medical journal Clinical Oral Investigations, (19) oral surgeons made a connection between TMJ and cervical instability. They found that segmental limitations (especially at the C0-C3 levels) and tender points (especially in the sternocleidomastoideus and trapezius muscles) are significantly more present in patients with TMJ than the control subjects

In the European Journal of Orthodontics, (20) doctors made a similar connection:

What? The TMJ altered your posture by stressing your cervical spine? Isn’t posture a problem of swallowing difficulties? Isn’t posture a problem of everything?

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. And 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.

Surgical Misadventure? An Absolute Contraindication for Temporomandibular Joint Reconstruction?

In October 2021, (30) doctors at the University of Cincinnati, Department of Surgery, Division of Oral & Maxillofacial Surgery reported on the “extensive surgical journey for a patient with Ehlers-Danlos syndrome (EDS) who underwent a total temporomandibular joint reconstruction and illustrates an ongoing challenge for oral and maxillofacial surgeons treating patients with connective tissue disorders and managing chronic pain symptoms.” The patient’s surgical team  “attempted multiple procedures including two failed total temporomandibular joint replacements and a myocutaneous vascularized free flap (jaw reconstruction).” This case, the authors noted, “demonstrates the potential for postoperative complications in patients with Ehlers-Danlos syndrome.”

The research on Prolotherapy for Temporomandibular Joint Pain and Dysfunction

Treating the whole joint. Comprehensive Prolotherapy for TMJ

In this section, we will discuss how to turn a degenerative TMJ environment into a healing environment through the use of Comprehensive Prolotherapy. The basic concepts are discussed in the video above.

Prolotherapy is the injection of simple sugar and dextrose. The idea is that dextrose will cause a strengthening and rebuilding of the soft tissue holding the jaw in place. Strengthened soft tissue, i.e, ligaments, will stabilize the jaw joint and pull things back into place and reduce destructive joint forces in the jaw.

In March 2019, doctors tested this idea. Publishing in the journal Mayo Clinic Proceedings (21)  these doctors announced these findings in their study to assess the LONG-TERM effectiveness of dextrose Prolotherapy injections in study participants with temporomandibular dysfunction.

Here is the research review:

RESULTS:

Study – Dextrose injections (Prolotherapy): Clinically important and statistically significant improvement in pain and maximal jaw opening.

An August 2020 study in the Journal of Alternative and Complementary Medicine (22) whose authors included noted Prolotherapy researchers, friends, and colleagues Kenneth Dean Reeves, MD, and David Rabago, MD noted:

Patient profile:

Patient treatments:

Outcomes:

Comparison between Prolotherapy vs. lidocaine

“I would consider referring a patient with chronic temporomandibular pain for dextrose injection if a clinician with experience in this procedure were available.”

In May 2019 editor Allan S. Brett, MD  reviewed this study for his colleagues, here is what he wrote in the New England Journal of Medicine:

Injection of hypertonic dextrose was quite effective in a randomized trial.

“In this double-blind randomized trial from British Columbia, researchers identified 42 patients with chronic temporomandibular joint pain and dysfunction. Patients received either 20% dextrose plus lidocaine (Prolotherapy) or lidocaine alone, injected into the temporomandibular joint three times at monthly intervals. At baseline, the mean pain score was 8, and the mean jaw dysfunction score was 7 (on 0–10-point scales). At 3 months, a decrease in mean pain score was significantly greater in the dextrose group (Prolotherapy) than in the control group (−4.3 vs. −1.8 points). A decrease in jaw dysfunction also was significantly greater in the dextrose group (−3.5 vs. −1.0 points).

“These results are quite impressive; the study methods are described in great detail, which increases my confidence in the findings. Although the results should be corroborated in another randomized trial, I would consider referring a patient with chronic temporomandibular pain for dextrose injection, if a clinician with experience in this procedure were available.”

Doctors writing in the Journal of Maxillofacial and Oral Surgery (23) found positive results utilizing Prolotherapy injections for TMJ in recent research (June 2017). Here is what they said:

Hypermobility disorders of the Temporomandibular joint (TMJ) can be treated by both conservative and surgical approaches. Conservative approaches should be considered as first-line treatment for such disorders.

In their study, the researchers examined 23 patients suffering from either chronic recurrent dislocation or subluxation of the TMJ who were treated with the single-injection technique prolotherapy with 25 % dextrose into the pericapsular tissues along with auriculotemporal nerve block.

In a December 2018 study in the Journal of Oral Rehabilitation, (24)  doctors proposed that dextrose Prolotherapy may cause a significant reduction in mouth opening and pain associated with TMJ hypermobility.

Prolotherapy reports on TMJ disc dislocation

In Prolotherapy research, doctors say that they see appreciable improvements in the number of episodes of dislocation and clicking after Prolotherapy treatment.

In supportive research doctors at the University of Karadeniz Technical University (26) say that they see appreciable improvements in the number of episodes of dislocation and clicking after Prolotherapy treatment. (There were ten patients in this study, all females, the average age of the patient in this study was 28 years old).

Platelet Rich Plasma Therapy for TMJ

In patients where TMJ symptoms are more advanced. We may also use Platelet Rich Plasma therapy in addition to the Prolotherapy treatments. Here we extract a patient’s blood and spin out the healing platelets and growth factors and inject that into the jaw/mandible area.

PRP application differs from office to office and in fact from research study to research study. In our office, we combine PRP treatments with Prolotherapy treatments to offer the patient a more comprehensive treatment. PRP injections in our office are typical “injections,” at each treatment, not a single injection.

A 2020 study published in the Journal of Oral & Facial Pain and Headache (27) examined the effect of Platelet-Rich Plasma Injections on pain reduction in patients with Temporomandibular Joint Osteoarthritis. In this paper, the research team examined 6 study outcomes and found according to the results of these trials, intra-articular injections of PRP were more effective than placebo for pain reduction (6 months post-injection and 12 months post-injection. Further: “Based on current evidence, PRP injections may reduce pain more effectively than placebo injections in Temporomandibular Joint Osteoarthritis at 6 months (level of evidence: moderate) and 12 months (level of evidence: moderate) postinjection. This significant difference in pain reduction could also be seen when PRP was compared to hyaluronic acid at 12 months postinjection (level of evidence: low). It can be cautiously interpreted that PRP has a beneficial effect on the relief of Temporomandibular Joint Osteoarthritis pain.

Researchers at the Department of Oral and Maxillofacial Surgery, Jaipur Dental College, in India published their findings in the National Journal of Maxillofacial Surgery (28) of their assessment of the effectiveness of PRP injections compared to hydrocortisone with local anesthetic in the conservative management of anterior disc displacement with reduction. If you have been diagnosed with TMJ you know that this is the displacement of the TMJ disc and the clicking noises that accompany the displacement.

The researchers found: “In the group of PRP injection, the pain was markedly reduced than the group of hydrocortisone with a local anesthetic; mouth opening was increased similarly in both groups and TMJ sound was experienced lesser in patients who received PRP.”

More on “blood injections”

Platelet Rich Plasma is a blood injection, the blood is taken from you and spun in a centrifuge to separate out the blood platelets. It is this separated fluid with concentrated platelets that gives Platelet Rich Plasma its name, and the injection of plasma rich in platelets. There are also autologous blood injections where the blood is taken from one part of the body and simply put back into the painful area, in this case, the jaw and TMJ joint.

“Blood injections” can be somewhat painful, the blood is very thick. This is why Platelet Rich Plasma injections started to gain popularity because they could offer the healing factor benefits of blood in a less thick injectable.

We are going to look at a January 2020 systematic review paper from the Department of Orofacial Pain and Jaw Function, Malmö University in Sweden published in the journal Clinical Oral Investigations (29) here the doctors looked at a comparison of autologous blood injection and a TMJ Prolotherapy treatment program.

To assess these treatments in comparison, the doctors examined previously published research on randomized controlled trials on TMJ luxation treatment published.

Summary and contact us. Can we help you?

We hope you found this article informative and 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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