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.
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.
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.
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.
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.