Monday, May 16, 2011

I'm a Triathlete and I have EDS!

Ehlers Danlos Syndrome Sucks!  There I said it!  I also feel the need to post today's blog to vent a little, but also to get some of my theories out there.  There seem to be NO common grounds in the medical world on what to do and what NOT to do regards to fitness.  First, I have to say that EDS peeps NEED to exercise.  If we let the muscles atrophy we will fall into a pile of mush!  Problem is, many physical therapist, physicians, etc dont know how to help us, or push a little to hard and actually HURT us.  Every movement in an EDS person must be purposeful and deliberate!  I will write a post one of these days with pictures of the exercises that I do!

I will eventually post an overview of my EDS pertinent workouts!  Here's the cliffs notes: Keep your body in line at all times!  It takes work to hold it there!  Never pull your head off the floor unless you are absolutely certain that you are not sheering your neck vertebra (that can cause migraines).  Also note I'm not a physician, just someone who has made this work!!

Get a bike that FITS, don't go to WalMart and get a Huffy! Spend the $$ and then go to a real bike store and get a bike fit.  It sounds stupid but it's the best money I've EVER spent.  Once I had the proper alignment  of my feet, knees, arms, head, etc it was like HEAVEN riding a bike.  Then when I added aerobars - WOW!    You will NOT touch the ground feet-flat, you will NOT reach the handle bars with your body upright, look at the guys that ride professionally, look at their form, its natural! After you get used to it, its AWESOME!

Same thing for Spin bikes.  Everyone thinks that you need to have your arms outstretched so it looks like you're reaching across a table, knees bent so you're banging yourself in the chest.  You don't, and honestly it will HURT YOU!, especially if you have EDS!  A few miles being 'out' of alignment and you'll be in pain.   You don't actually 'stand next to the seat and place it next to your hip' to get a height.   You measure it by looking at your foot and knee as they rotate through the crank.   Listen to the instructor!  I personally cannot ride a regular 'stationary' bike, or a 'schwinn' spin bike either, they don't let me get close enough.  Kaiser spin bikes RULE and can get me in perfect alignment!

For running, take a Chi Running class or clinic (I'm having one for charity in Worcester) - its amazing!  it teaches you how to focus your FORM so you don't stress the joints!  This can be transferable to LIFE as well, not just 'running' in competitions!  It helps me in walking as well!

For Swimming, I do Total Immersion Swimming, same concept as Chi-running.  I focus my form, everything is IN ALIGNMENT! (see a theme?).  

Anyway, I spend so much time training, and thinking and training!  It's hard not to get run down!  The past week has been pretty hard!  Really this winter has been very rough!  I have learned SO Much about EDS.  I'm trying to continue to be a positive role model and keep 'running.' 

I have lofty goals, but they aren't without their setbacks!  I didn't know what the heck it was before, as this is the first year I had an actual 'label'.   I go through phases where I train and train and train then all of a sudden I feel like I'm at square one.  I would think "oh I'm just fat and out of shape, I'm never going to get there."  I feel like something LITERALLY sucked all my energy out of my muscles.  Turns out that the weather does that to the EDSer!  It's not just the joints, but it's the muscle fatigue too and it's weather related!  The past winter has been particularly brutal, and this past week has been INSANE!  I have NO idea how I'm going to get through my Half Ironman in just a few weeks!  My joints and muscles have reverted.

I am as stubborn as they come (thank you for being born in December).  I am very Capricorn :).  Nothing can stop me.  I have my willpower, but my body may not cooperate with my "bullheadness."   I will try, but there's a time limit here, and I'm not about to HURT myself.

Being aware this year is a double edged sword!  Last year at the Cranberry Olympic Tri, I walked a good portion of the run.  I used a wide stride and I just killed the joint socket and couldn't walk for 2 days!  Now I know how bad it was on my joints to keep this very wide stride, and I will use my Chi Running form through the entire race!   

To all my Zebra Friends out there!  You have to have goals!  Stay in alignment!  You can exercise (the amount obviously depends on your current condition, but don't lose what  you have)!  Also don't lose the POWER you have, both mentally and physically! 

I've really struggled this week, but the one thing I've kept an eye on is that I am strong and I plan to keep it that way!


  1. Great Job Laura! Well written.

  2. I would love to talk to you more! I just found I have EDS, I am training for my first sprint triathlon. Injury after injury after injury, new physical therapy exercises, stretches, chiropractor, so much to stay on track!

  3. Thank you! It's so depressing and frustrating trying to exercise with EDS. With lockdown keeping us so so much more immobile and a good amount of weight gain, I'm in so much pain right now and determined to get fitter again but it is very challenging!!