Category: Comorbidities

Hypermobility and Ehlers-Danlos Syndrome: What I Wish Everyone Understood

Hypermobility and Ehlers-Danlos Syndrome: What I Wish Everyone Understood

What is Hypermobility?

Hypermobility refers to unstable joints that bend farther than they should.  Many hypermobile people do not realize that what they do is out of the range of normal motion or that it could harm them, until they start having pain. And then often when hypermobile people finally DO have pain, it gets misdiagnosed as something else because what hypermobility is and what it can cause is so poorly understood. 

Not only did I spend most of my life not realizing that my chronic pain was caused by my hypermobility, I was so convinced by others in my life that my pain was “normal” that it took me a long time to even admit that I was different.

When someone first told me I was hypermobile and should look into EDS, I told them that I didn’t have chronic pain. Except for the part where I had some amount of pain every single day, and people without chronic conditions go days or even weeks of their lives without feeling pain unless they are injured.  I didn’t feel that I had any physical abnormalities or “loose” joints even though I injured my rotator cuff parallel parking my car at age 18, and had fully dislocated my hip around the same age doing kicks in a martial arts class. I thought I couldn’t be hypermobile because I couldn’t do splits, but I had all kinds of party tricks I could do with my bendy hands and fingers, and historically *used to* be able to do a number of flexibility tricks that I stopped being able to do because of what turned out to be osteoarthritis.

Everything I described in the previous paragraph is a symptom of my hypermobility, and is not typical.  I wish I had understood that a long time before now. It would have saved me a lot of pain and rehabilitation time.

Here’s what I wish patients, practitioners, family, and friends understood about hypermobility. 

Things I Wish Everyone Knew About Hypermobility

  • Hypermobility is NOT rare. 
  • It’s not just human pretzels –  Hypermobility is not the same as being flexible.
  • Hypermobility can affect more than your joints.
  • Hypermobility is linked with mast cell activation disorders.
  • Hypermobility pain is treatable. 
  • Even if you “only” have hypermobility and not Ehlers Danlos syndrome, you still need medical care for your symptoms.

Hypermobility is NOT rare. 

At least 3% of people have Joint Hypermobility Syndrome. That’s about 9 million people in the United States.  This is a conservative figure: other statistics place it closer to 20% of people.

It’s Not Just Human Pretzels: Hypermobility is Not the Same as Being Flexible

Many people confuse being hypermobile with being “flexible”, and think if they aren’t contortionists or can’t do splits that they can’t possibly be hypermobile. This isn’t true. 

Flexibility refers to your muscles being able to lengthen. Hypermobility refers to your ligaments lengthening.  This lengthening may not cause inflammation and pain in the tendons and ligaments when someone is young –  but it may begin to happen with age. Regardless of whether the ligaments or tendons become painful or damaged, their laxity creates a situation where your joints just don’t stay fully in the socket and slide around in the joint space and damage the cartilage, and this can cause bursitis and/or osteoarthritis.  Again, it is common for joints to “feel fine” when younger and become damaged with age. 

Depending on the person and the type and degree of hypermobility,  these hyperextensions causing pain “with age” can mean age 10, age 20, age 30, or even age 50+. 

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Mast Cell Activation Syndrome

This blog is about corn allergy, but it’s no secret by now that I don’t “just” have a corn allergy. I also have a mast cell disorder, and that is likely the reason my corn reactions are so severe and sensitive. It is also the reason why I react to so many other things besides corn. More and more people with corn allergies are looking into mast cell disorders for themselves, so I figure it’s high time for me to discuss them here.

What Are Mast Cell Disorders?

Mast Cell Activation Disorders (MCAD) are abnormalities of your mast cells. Mast cells are a very important part of your immune system and are involved in your body’s defense against pathogens. They protect your body from invaders by releasing inflammatory factors including histamine, such as in an allergic reaction. When you have too many mast cells, or they are malformed or dysfunctional, you can have allergic reactivity without the same immunological pathways involved in allergies. There are two types of mast cell activation disorders: Mastocytosis, and Mast Cell Activation Syndrome (MCAS).

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Ehlers-Danlos Syndrome Awareness Month: My Life as a Zebra

May is Ehlers-Danlos Syndrome Awareness month, and this is one of the rare diseases I am diagnosed with. So I’m taking a moment to depart from the topic of corn allergy to give you some info about it.

eds awareness

Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders. EDS causes weak or defective collagen, which can affect many systems within the body- basically anywhere you have connective tissue. There are many types of EDS, and all of them involve joint hypermobility (double-jointedness), fragile tissue, and fragile/easily-bruised skin. Some types of EDS such as Vascular Type can cause arterial or organ rupture because the connective tissue of the organs and veins are weak.

There are 15 types of EDS, which you can learn about in detail from the Ehlers-Danlos Society.

The type I have is Hypermobile Type, which is the most common type. As of 2017, there is also a related condition, Hypermobility Spectrum Disorder, which is even more common than hypermobile type EDS.

Two things I would like to point out about hypermobility:

1) It is possible to be hypermobile without being flexible. 
Hypermobility has to do with how well your ligaments hold your bones together, while flexibility depends on the ability of your muscles to stretch. In many people, especially older hypermobile people, you may lose flexibility due to joint damage or muscle tension as the muscles try to hold the loose joints together.  Here’s a writeup from Yoga Dork that I think explains the difference well.

2) It is also possible to be hypermobile without having adverse symptoms from it. 
I often feel like this just means you don’t have adverse effects “yet” but I can allow for other viewpoints.

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