Posted in health

Your Voice: EDS & Hyper-mobility. Grace’s story

Photo credit: Jack Moreh

A lot of people haven’t heard of the term Hyper-mobility, or the conditions related to it. Ehlers Danlos Syndrome & Joint Hyper-mobility Syndrome are among these conditions.

EDS is a connective tissue disorder, where the body has faulty collagen. This means that the joints don’t have the necessary connective tissue around them, allowing for easy dislocations and subluxations along with a giant list of symptoms that you’ll find below. 

Now, before I bombard you with information about Hyper-mobility, I’ll provide a brief back story on how I got diagnosed with Hyper-mobility Ehlers Danlos Syndrome and what led me to the diagnosis just a few months ago.

I was 18 at the time, completing my yoga teacher training certification. The training was done in spurts of twenty hours every second weekend, for four consecutive months.

I would need the entire following week to rest and recover since I was in the worst pain I had ever felt in my life. I was the youngest person in my teachers class; why did I feel as if my body was being ripped in half, while others twice or even three times my age only had mild discomfort?

“Why did I feel as if my body was being ripped in half…”

I took muscle relaxants, assuming that I was just pushing myself too hard. Co-incidentally, I finally had an appointment to see a neurologist for the chronic migraines I’d had since the age of twelve.

When he asked me what I did, I was so happy to tell him that I was a freshly graduated yoga teacher that I think I almost screamed it!

At that moment, I noticed that something in his face changed; it’s like a lightbulb turned on in his head. He asked me if I was double jointed and again I excitedly replied yes. He performed a series of tests, pulled my skin to see how stretchy it was (yes, seems weird but I’ll explain after) and there we had it, my hEDS diagnosis. 

So what is Hyper-mobility?

Being flexible is awesome, right? I thought so too, until I realized this was literally breaking me. I am not saying that flexibility is bad for everyone, just if you are hyper-mobile.

Photo credit: Stuart Miles

Let me clarify that yoga didn’t actually “break” me. This condition is genetic and was in no way caused by yoga. Yoga was just what led me to realize something in my body wasn’t right.

Those of us with hyper-mobile joints will have joints that extend beyond the normal range of motion for that joint. For those of us specifically with hEDS, this is because we have faulty collagen, which is one of our connective tissues.

Someone without hyper-mobility has joints that act like rubber bands, which can stretch to a certain limit and then retract back to their normal state. If you are hyper-mobile, have JHS or EDS, then your joints are more like string and just kind of do whatever they want. This is also why my skin is so stretchy.

I am one of the lucky ones who don’t experience multiple joint dislocations in a day. I do, however, frequently sublux (partially dislocate) my neck and shoulders at least 50 times in a day.

“I am one of the lucky ones who don’t experience multiple joint dislocations in a day.”

A lot of people with EDS and JHS go their entire lives without being diagnosed. My condition has such a long list of symptoms and complications that all my doctor could instruct me to do was research this condition to the best of my ability.

For so many years, I went to my family doctor with random complaints and health concerns that either went away in time or were dismissed as IBS and hormonal changes.

This is the case for so many who struggle with EDS and JHS; they simply have so many symptoms that seem like they couldn’t possibly relate to each other.

In my opinion, this isn’t a rare disorder because not many people have it- it is a rare disorder because it just isn’t known about or diagnosed. I was extremely lucky to have a specialist so knowledgeable in EDS. He assured me that there were many like me in my hometown of Ottawa, Ontario, who also struggle with this condition. 

I will list the possible symptoms and side effects of JHS and EDS. I’d like to note, however, that if you decide to research more, there are 13 types of EDS, one of them being the hyper-mobility type, which I have. Hyper-mobility does come with almost all 13 forms of EDS though, as they all relate to the faulty connective tissue, collagen. 

By sharing my story, I hope to bring awareness to this condition, and hopefully help someone who thinks they may be in a similar situation.

JHS and EDS symptoms: 

  • Joint Hyper-mobility
  • Joint pain and stiffness 
  • Dizziness, or increased heart rate when standing (Diagnosed as Postural Orthostatic Tachycardia Syndrome) 
  • Loose or unstable joints that dislocate easily
  • Mitral Valve Prolapse
  • Recurrent strains and sprains, these also feel more intense for those of us suffering from hyper-mobility (I only ever had 1 dislocation in my life, but strains and sprains were and are a daily thing) 
  • Redundant skin folds on the eyes
  • Bladder control issues
  • Fainting or feeling the need to faint, this can sometimes look like a seizure 
  • Chronic pain 
  • Dental issues are more common
  • Random spells of flu – like symptoms 
  • Headaches/Migraines 
  • Constant muscle spasms 
  • Brain fog 
  • Hormonal imbalances, heavy and painful menstrual periods (for women) 
  • Locking or clicking joints 
  • Extreme Fatigue 
  • Slow healing wounds
  • Hernias and organ prolapse 
  • Poor coordination 
  • Scratches that can easily tear skin or leave friction burns 
  • Lack of muscle tone, because we are using our flexibility rather than strength 
  • “Flat feet” 
  • Risk of pregnancy complications
  • Jaw pain
  • Stretchy, loose, velvety skin. (I describe mine as baby skin) 
  • Skin that bruises easily (I cannot count how many times I had bruises & hickey looking marks that were not caused by any type of injury.) 
  • Digestive issues such as heartburn or constipation. 

Somehow, I feel that I still haven’t fully explained EDS or JHS to you, but I don’t think I ever could. I am still learning about this condition myself. It is so complex, and I think that is why it’s so under- diagnosed.

If you think you, a friend, or family member is hyper-mobile, then do some research on it and talk to your doctor. Below are some links to the diagnostic criteria for Hypermobile Ehlers Danlos Syndrome as well as the Beighton Test, which is used by doctors to determine hyper-mobility.

Although this condition is rare and will never go away, I don’t stop moving and neither should you. I am continuing to learn safe and healthy ways to move, pain free.

I still practice yoga, just in a much safer way for my body than I had previously been doing. My mantra is “Less is more. I will get stronger everyday.” I encourage anyone suffering from EDS or chronic pain to remember this, and use this mantra in your daily life. 

Namaste & Sat Nam my friends, 

Grace

Photo credit: Matthew Henry

https://www.ehlers-danlos.com/assessing-joint-hypermobility/

https://www.ehlers-danlos.com/heds-diagnostic-checklist/

A big thank you to Grace for writing, and sharing, her story with us today. If you have a story you’d like to share, please contact Judy via the contact page or feel free to share in the comments section.

Author:

Cozy mystery author, cancer warrior, certified yoga teacher, food lover, empath...healthy, happy, strong. Namaste!

2 thoughts on “Your Voice: EDS & Hyper-mobility. Grace’s story

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