#EDSFitTip – The importance of keeping a micro-bend in your elbows and knees with Joint Hypermobility Syndrome (JHS)/Ehlers-Danlos Syndrome (EDS)

FullSizeRender-36#EDSFitTip – With joint hypermobility (AKA – “double-jointed“), it’s important to be mindful of your range of motion in all joints, especially your joints that are most “loose” or “bendy.” While I’m not über hypermobile in my elbows, they still hyperextend. When lifting weights or doing arm exercises (i.e. in pics below), I do not extend to my “full range of motion,” even if the activity calls for it.

The reason?

Lat pulls on the Megaformer at SolidCore – one of my most favorite exercises.

My elbows’ full range of the movement extends past a normal and safe range, versus elbows that do not hyperextend. To protect my joints, I focus on keeping a micro-bend in my arms when working out and in my knees at all times. I’ve also learned to sleep with my knees slightly bent and often do the same when laying face down (i.e. on a massage table). My knees easily dislocate if bumped, or if I relax too much – something I’m more than obsessed with preventing.

Each person with Joint Hypermobility Syndrome (JHS)/Hypermobility Syndrome (HMS) presents differently, as does the degree of mobility in each joint that is hypermobile. People with “loose joints” or JHS/HMS due to conditions such as Ehlers-Danlos Syndrome (EDS) – Hypermobility Type (HEDS/EDS-HT) are usually not hypermobile in all joints, or even in both big and small joints. Some people are hypermobile in every joint (like me!), but countless others often appear too “stiff.” My personal guess is that about half of those with EDS/HEDS are more inflexible or too stiff versus super flexible, especially as people age — a good and bad thing with hypermobility. A person can appear not so flexible and still have hypermobile joints. Flexibility and hypermobility are not one in the same, despite frequently used interchangeably. Similarly, you can be flexible, but not hypermobile. When you are hypermobile, your muscles do the work that your connective tissues cannot – meaning your muscles work twice as hard to keep your joints and body stable

IMG_2854to make up for the slack or laxity from the connective tissues. Because our muscles have to do twice the work than the muscles of someone who is not hypermobile, the result is often painful muscle spasms and sometimes more permanent muscle contractures. Hence, one of the main reasons generalized chronic fatigue and Chronic Fatigue Syndrome (CFS) are common comorbid conditions with Ehlers-Danlos.

A few examples of the various joints in our bodies:

Small joints = feet, toes, fingers, and hands.

Large joints = pelvis, knees, hips, and shoulders.

Other typical hypermobile joints = the TMJ, ankles, wrists, neck, and the spine.

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome is defined as “a group of connective tissue gene disorders that produce a spectrum of complex problems across multiple systems of the body. Each type of EDS is defined as a distinct problem in making or using one of the types of collagen.” (EDS 2016.org“What is EDS?”). In the early 1900’s, Ehlers-Danlos syndrome was named in Denmark and a present, there is no cure. Recently, Dr. Rodney Grahame, MD of the United Kingdom, stated that “no other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndrome.” (EDS UK – quote below)

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Professor Rodney Grahame’s quote on modern medicine’s neglect of Ehlers-Danlos syndrome.

Currently, a clinical diagnosis of Hypermobility EDS (HEDS/EDS-HT) or assessment for another type of Ehlers-Danlos syndrome, such as Classical EDS, is based mostly on the Brighton Criteria. The Brighton Diagnostic Criteria utilizes the Beighton Score for Joint Hypermobility, a simple clinical assessment for generalized joint hypermobility, combined with various major and minor criteria commonly associated with EDS. Even though EDS can be diagnosed through clinical assessment, there is no way to know for sure what type of Ehlers-Danlos syndrome or related connective tissue disorder a person has, without a proper genetic test. Unfortunately, genetic testing for all known types of Ehlers-Danlos syndromes are not presently available, nor have the genetic mutation(s) associated with Ehlers-Danlos syndrome – Hypermobility Type (HEDS/EDS-HT) been identified.

In many ways, the EDS community has learned so much over the last five years, most specifically in the last two years, yet there is still so much more to discover. EDS researchers have only begun to understand the complexities involved with all types EDS. Similarly, only research studying cellular epigenetics will be able to help us understand how the various genetic mutations associated with other connective tissue components can affect the collagen protein mutations involved in each type of EDS and vice versa. IMG_0419

To read more about clinical assessment for Ehlers-Danlos syndrome, go to – The Brighton Diagnostic Criteria.

A few key points concerning the various terms used to describe hypermobility:

The current viewpoint of those who research EDS is that the terms “double-jointed,” loose joints,” joint hypermobility, Joint Hypermobility Syndrome (JHS), Hypermobility Syndrome (HMS), and Ehlers-Danlos syndrome – Hypermobility Type (HEDS/EDS-HT), all refer to one in the same condition. Furthermore, all types of Ehlers-Danlos syndromes, as well as numerous other connective tissues disorders are known to cause joint hypermobility. Collectively, all conditions that cause joint hypermobility are referred to as “hypermobility syndromes.” It is believed that EDS is the most common group of IMG_1658connective tissue disorders in the world, and recent evidence indicates EDS may be one of the most under-diagnosed disorders.” (EDS2016.org)

The challenge is understanding when, how and why otherwise benign joint hypermobility, becomes a multi-systemic, chronic condition diagnosed as JHS/EDS-HT. Dr. Alan Pocinki, a well-known physician in EDS community, who practices in the Washington, DC area, stated in his 2010 clinical paper titled “Joint Hypermobility and Joint Hypermobility Syndrome” that,

“Experts estimate that up to 10% of the general population may have some degree of hypermobility, with women affected about three times more often than men. Most hypermobile people do not develop any problems from their loose joints, but some suffer chronic pain and other symptoms. Those who do suffer chronic joint pain and other symptoms related to their hypermobility or to the looseness of other tissues that often accompanies hypermobility have a condition called joint hypermobility syndrome (JHS).”

Until we understand the cause(s) of joint hypermobility — heritable or not — it’s nearly impossible to separate those with joint hypermobility and no issues, from those with JHS/HEDS/EDS-HT. HEDS/EDS-HT presents with varying degrees of joint hypermobility, in addition to chronic, multisystemic, as well as severely debilitating issues (i.e. chronic pain, functional GI issues, allergies and more). The exciting news is that an official consensus will be made at the EDS International Symposium in May 2016. This ground-breaking symposium will determine correct EDS terminology (and if there is, in fact, a difference between all commonly used terms), reclassify the diagnostic criteria for all types of Ehlers-Danlos syndromes, and will establish guidelines for the standard of care for all types of Ehlers-Danlos syndromes, which physicians will follow internationally.

Additional Resources:

To learn more about all Hypermobility Syndromes, go to www.hmsa.org.

To find out more about the types of Ehlers-Danlos syndrome, go to www.ednf.org.

To learn about Vascular EDS (VEDS), go to www.annabelleschallenge.org

To learn about the EDS 2016 International Symposium in May 2016, go to www.eds2016.org

Related blog posts:

Surviving SolidCore – Hypermobility meets the Megaformer

Striving for the [100 class club] – [solidcore] and the [hypermobile] participant

Answers to questions about exercise and EDS

Moving Naturally with Hypermobility – how to find out what hurts and why it’s important to helping manage chronic pain

The Hypermobile Yogi – Practicing Yoga with Joint Hypermobility Syndrome

New Year/New You! 10 Active Online Support Groups for those with EDS and other chronic illnesses

Living with Chronic Pain – Tips for managing pain associated with EDS