A Multidisciplinary Approach to Joint Hypermobility Syndrome

What’s This Research About?

Research on hypermobility is lacking. At the time of this publication there was not a consensus on how to manage the common symptoms of pain and fatigue in this population, hence the impetus for this paper. The authors suss out possible treatment options for hypermobile people suffering from pain and fatigue.

The authors categorized pain into three types.

  1. Nociceptive pain which stems from tissue damage and/or inflammatory response. Current pain science shows that tissue damage will not always cause pain. You can sense pain from tissue damage but not always. As we’ve probably all experienced with never having sensed the root cause of an enormous bruise on our leg.
  2. Neuropathic pain is pathology to either the peripheral or central nerves which can come from compressed or damaged nerves. They will present with entrapped nerves, disc herniation, or axonal neuropathy.
  3. Dysfunctional pain is a central sensitization where the pain is amplified with little stress to the system and can be poorly localized. Fibromyalgia, headache, and irritable bowel syndrome (IBS) are examples of these.

With hypermobility it can be problematic figuring out which type of pain is occurring at any given time making treatment harder to tackle. In general people with JHS can be described as having a “mixed chronic pain syndrome” that has to be treated with a multi-pronged approach.

The second major symptom they cover is fatigue, which is present in 80-90% of those with this condition. They point out that many individuals with chronic fatigue syndrome (CFS) may actually have JHM. They mention that a subtype of CFS could possibly be created in this case.

TITLE: Management of Pain and Fatigue in the The Joint Hypermobility Syndrome: Principle and Proposal for a Multidisciplinary Approach

ORIGINAL LINK

PUBLICATION: American Journal of Medical Genetics

DATE: 2012

AUTHORS : Marco Castori, Silvia Morlino, Claudia Celletti, Mauro Celli,  Aldo Morrone, Marina Colombi, Filipino Camarota, Paola Grammaticco

Beighton score: A diagnostic scoring system that gives one point each for excess laxity on right and left: elbow, thumb, pinky, and knee. One point is given for forward fold with palms to floor. High score is 9, suggesting a high degree of joint laxity.

Dysautonomia: A malfunction of the autonomic nervous system that creates problems with regulating heart rate, blood pressure, digestion or temperature control.

Ehlers Danlos syndrome (EDS): A collection of heritable connective tissue disorders thought to alter the biology of collagen in the body (the most abundant protein), which can lead to multi-systemic symptoms, such as: hypermobile joints and soft, stretchy skin, easy bruising, easy wounding, poor wound healing and/or atrophic scarring.

Ehlers-Danlos Hypermobility Type (hEDS): 5-7 or higher on Beighton score plus two or more musculoskeletal issues (pain, dislocations, etc.), systemic involvement (as described above) and positive family history.*

Joint Hypermobility (JHM): A condition that affects one or more of the joints goes beyond its normal limits. Can be diagnosed with the Beighton score, and can also include systemic issues (central nervous system fatigue, pain, anxiety, dysautonomia, and abdominal pain). Diagnosis can be difficult because there can be laxity with no systemic issues, or conversely no laxity with systemic issues. There can be a loss of range of motion due to age or physical limitation but they may still have JHM.

Joint hypermobility syndrome (JHS): A disorder of the connective tissue that can result in unstable joints, skin abnormalities, chronic pain, and fatigue. It can also include many other symptoms. The term “hypermobility” includes a an array of sub categories with a wide continuum of symptomatology. The broadest umbrella term is “hypermobility spectrum disorders”. The spectrum ranges from those who are high functioning (with the only symptom being generalized joint hypermobility), to people with so many symptoms they can be debilitated. The latter would most likely be someone diagnosed as Ehlers Danlos syndrome, hypermobility type (hEDS).

How Was This Research Conducted?

The researchers searched PubMed using the terms: hypermobility, pain, fatigue, and dysautonomia. They also pulled articles from the bibliographies of the papers they found from the initial search. They previously had reviewed research on quality of life (QOL) and disability with JHM/hEDS subjects to tie in all the complex symptoms. In order to arrive at treatment protocols, they also pulled from their own clinical experience due to the lack of robust research on this subject.

What Happened?

Pain

Because JHM affects so many systems, pain is present all over the body in a variety of ways. Limb pain is the most common, but they also present with back and cervical pain, headache, abdominal, and pelvic pain.

Limb pain can manifest in the joint itself (arthralgia), or as myofascial pain. Researchers suggest aerobic activity, light stretching and strengthening. They also suggest avoiding high impact sports.

In this population headache symptoms usually are caused by cervical instability, temporal mandibular malocclusion, and or hypotension. They suggest strengthening the neck, and treating the jaw for mal-alignment as possible aids. For boosting the blood pressure they advise proper isotonic liquid intake, and increased salt intake.

Although highly prevalent, abdominal (present in 86%) and pelvic pain don’t have systematic analyses of a treatment protocol in the research, so there is not a detailed recommendation on best ways to help with this pain. Their suggestions included dietary and pharmacological treatment.

Fatigue

The main factors they found contributing to fatigue were joint and muscle pain, dysautonomia, respiratory insufficiency, and poor sleep. Poor sleep can be due to apnea, restless leg, and back or limb pain. A good method to identify the cause of their disturbed sleep is a sleep study.

Treatments for muscle pain, and hypotension are mentioned above. Their breathing insufficiency can be aided with better breathing and diaphragmatic exercises. The exercises can work on rate and volume of breath, as well as rib positioning to increase the efficiency of the diaphragm. A continuous positive airway pressure (CPAP) device at night can help with sleep apnea. They also advise daily intake of L-carnitine (250 mg) and coenzyme Q10 (100 mg) to help with the fatigue.

What Does This Mean For Teachers?

Many of the treatment options included aerobic fitness, light stretching, and strengthening. Some of this can definitely be accomplished in a yoga class. There is a wide variation in how people experience hypermobility. Some are highly symptomatic and symptoms can be exacerbated with very little exertion on the system. If you have these types of students in your class, make sure they go at their own pace. They should pick and choose the poses that work for them on any particular day.

Cue hypermobile people to create tension several degrees shy of their end range in order to build strength. It’s ill advised for them to hang on their ligaments at end ranges. Instead encourage them to contract their muscles as much as they can. As they gain control in those positions they can go back to their end range and gain ownership and strength at those more extreme ranges.

Hypermobiles who are stronger can stand on two blankets (acting like sliders) in a warrior type of pose. This forces them to contract all their muscles to keep their feet from sliding out. This is may be more suitable in a private session and should be done slowly, especially for more symptomatic clients.  

Restorative yoga classes also can be helpful for those individuals who are anxiety prone. It can allow them to tap into their parasympathetic nervous system which may also help with dysautonomia, and sleep issues.

Additional Comments

This is a highly complex condition that is hard to cover in one study. Many of the recommendations here are based on the authors’ clinical experience. They are in a medical setting so they did advise a lot of pharmacological interventions.They did not go into any detail for specific exercise programs.

It appears that the authors work with more symptomatic clients. Perhaps that is why they recommend light exercise and did not go into much detail about strength training. I find that higher functioning hypermobile people benefit a great deal from weight training as it alleviates limb pain. As muscles get stronger within and around the joint, it can decrease shearing and degeneration which can lessen pain.

Since pain is so prevalent in this condition, it may be wise to gradually introduce increasing tolerance to pain. Increasing tolerance to pain can potentially improve quality of life. Modern pain scientists are looking at the mystery of unlocking the key for people who present with tissue damage, but are tolerant to the nociceptive signal.

Lastly, when dealing with recurrent or chronic pain, individuals benefit from figuring out factors within their life that trigger their pain (e.g., job stress, hormones, poor sleep, etc.), as well as factors that alleviate it (e.g., massage, aerobic exercise, good diet). Hypermobile people can work on unlocking their own equation of what makes them more or less tolerant to their pain.

*Latest diagnostic information on hEDS:

The International EDS Consortium in March 2017 proposed a revised EDS classification. They cover all different aspects of EDS in this edition of the journal, American Journal of Medical Genetics: Part C (Seminars in Medical Genetics) 175C, 2017.

By |2018-03-18T15:58:58+00:00February 20th, 2018|Conditions|0 Comments

About the Author:

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Catherine brings to her role as a personal trainer a wealth of education and years of athletic experience with training in track and cross country running, gymnastics and rowing, boxing and yoga. She received a B.A. in Sports Medicine and Exercise Physiology from the University of San Francisco and an M.A. in Kinesiology at San Francisco State University. She also holds certifications in ACE, FMS I and II, PRI (Myokinematics, Respiration), Neuromuscular therapy, FRCms, and FR. As an athlete she sustained several injuries, which led her on the path to study and understand the body and the mechanisms of healing. "I was fascinated with everything I learned. Throughout college, I worked with USF athletes as an athletic trainer in the prevention and rehabilitation of injuries. Soon I was able to transfer all of this knowledge into helping everyday people with their aches and pains." Her thirst for knowledge is never quenched and she continues to evolve her practice to stay up to date on the latest research and methods to help her clients with present injuries, pain, and best ways to acquire strength to maintain a healthy body. "I believe assessment is still key in starting with clients but stability, global strength and everyday movement are key to people's longevity, and quality of life. If people can slowly and systematically expose their bodies to different loads to gain strength and mobility they will better succeed to get the most out of their bodies." Learn more about Catherine Cowey.

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