Thursday, May 30, 2013

EDS Awareness Month

This post is about me and living and training with Ehlers Danlos Syndrome. 

I have written many blog posts about EDS.  As I've said before I don't want this blog to be ABOUT Ehlers Danlos, but it is part of me.  I've tried to describe some daily issues I experience in hopes to bring some more awareness to the disorder.  For Awareness month, I have added this new post.

This video is an example of what others with EDS experience.

It is a spectrum disorder, so it's affects are different on each and every one of us.  Today I will share more with you on how it affects ME.  I am highly active for someone with EDS, but it isn't without sacrifice or pain.  I usually laugh when I am asked "on a pain scale of 1-10, what is it?" - I often giggle, who's pain scale? I live with a 3 every day. 3-4 is normal.  If I ever wake up and have no pain, I wonder "am I dead?"

My migraines are what led me to my diagnosis of EDS.  Migraines are debilitating, at one point I had a migraine for 24 days out of every month, I would have just a regular headache the other days. Then it would repeat.  I learned to deal with them, and I became a fine tuned medical testing facility.  I know so much more about my body than most non-medical professionals.  My chiropractor laughs when I tell him the exact bones that are out.

I have learned how to cope, from medication,  to massage, heat, cold, hottub, KTTape, or rest.  Rest is a hard one for me though. As a Type A, go-getter, I find it REALLY hard to 'just rest,' especially when I have an Ironman schedule to keep!  It is hard to tell when I'm being lazy and just 'want' to skip a workout, vs when I should just rest.  Some days, I have no choice.

On an average day, one to several joints will be subluxed (aka out of place).  If I run, the top of foot collapses at the Navicular bone. I try desperately to run and not aggravate it, orthotics don't really work because my bones are just squishy and fall over the orthotic.  KT tape helps to reduce the squish, but it doesn't eliminate it.  After a 40 min run, I am guaranteed to not be able to put weight on my foot for a few hours.

This is one of the reasons I hate running ;). But hey, it's part of Ironman so I have to push through!

I had a ton of problems with my neck and upper back, then in Feb I had a breast reduction.  (I owe a blog post on that alone).  It was the best thing I've ever done and can't believe I waited this long!  My migraines have been reduced (not eliminated), and my upper back pain and ribhead subluxations have been reduced by I'd say 50%!  Not to say they don't still bother me, but a 50% reduction in that pain is calls for a WHOOP WHOOP!

Another area of contention is my shoulder. This past weekend it was not cooperative.  I had a 100 mile ride and every 30 miles or so I was off the bike, looking for a tree to shove my arm back in place. It isn't as painful as the foot, but it is incredibly annoying.  I've fully dislocated my shoulder before on a bike ride, it happens so fast too. I stumbled  on my aerobars and next thing I knew my shoulder was at my ear. Unlike normal humans though, I can shove it back and move on. Sure it hurt, but I live.

My hips often sublux, it happened on the 100 mile ride I mentioned before.  The simple act of swinging my leg over the bike pulled my femur straight out of the hip joint.  Sometimes I can put that back, sometimes not.  In this case, I rode with it out for about 20 miles then it went back.  It causes pain and I know if I KEEP it out of the socket that I will inflame the entire joint and will be in trouble.

There are many other joints that sublux or just ache, hands, neck, knees, really anything can come out on any given day. It depends on the weather or who knows!

Another issue for those with EDS (or really any joint problem) is the weather.  High and low pressure systems particularly affect us.  A high pressure system is like the earth giving us a hug, holding in the joints.  Low pressure turns me into a big blob!  The last week has been High ,Low, High , Low, extreme temperatures, crazy events, storms, etc.  I am paying for it dearly.  All I wanted to do last week was sleep, and it just killed me, I felt so lazy for not doing workouts. I finally gave up and decided my body needed a break.  Another KILLER thing is when these systems come through it SUCKS THE LIFE out of my training.  I can  lose strength and muscle in a matter of days.  It is the price I have to pay.

I have to THINK about all of my joints and muscles with every step, pedal or swim stroke.

Do I write this for sympathy? no.  It is for awareness of those with 'invisible' illnesses. You REALLY don't know what people around you are going through, so careful not to judge.

There isn't anything I can do about the EDS. It isn't curable, and it's not that treatable either.  I do fear that I use it as an excuse sometimes for my lack of speed, or sometimes when I just don't want to do a workout.  There is a fine line between 'excuse' and 'yes I need to rest.' I HOPE I've finally found that line.

It is not without cost, I assure you. But I wouldn't have it any other way, I enjoy being active.  I don't do small either, hence IRONMAN!

Here's to another High pressure system!

**I know I've been  slacking on the actual blog posts, I do frequently update my facebook page though: facebook !


  1. Wow! You are right - EDS *is* a spectrum! I do not have this type of frequent dislocation or subluxing. My experiences are so different - when I dislocate it is profound and often requires a hospital visit to reduce the joint!

    Good luck with the training, your determination is awesome.


  2. Keep up the post! :) BTW - I'm glad you did the reduction too. Love the new look!


  3. You are definitely an inspiration to others. Spreading awareness about Ehlers Danlos Syndrome is very important. EDS can be a mild condition, but it can turn out as a life-threatening form that can damage our blood vessel or organs. It may be scary to have this, but thinking of all the available treatments these days like massage, chiropractic care, and more, somehow makes us feel quite relieved. Thanks for sharing this! I hope you're doing great with all your endeavors. _Shan@