EDS stands for Ehler’s Danlos Syndrome. And it’s been a recurring phrase in my family ever since my little brother got diagnosed about fifteen years ago. According to the Ehler’s Danlos Society website (http://ehlers-danlos.com/what-is-eds/), EDS is an hereditary syndrome that effects the connective tissue in the body. Although there are many types, the most common “is known or thought to alter the biology of collagen…. (the most abundant protein), which can lead to multi-systemic symptoms.” EDS has been identified as having six different types, all of which have genes associated with them – except for the hypermobile syndrome.

Why bring this up, now?

If you’ve been reading along, you’ve noticed that I go to the physical therapist at least twice per year. Also, I cannot follow a recommended training program for running (as in prepare for a marathon in 6 months! NO WAY! I’ve been trying to go farther than a 10K for four years with not so much luck or success), and I cannot train with anyone else because they inevitably progress faster than I do. After working on triathlons, running and cycling races and rides, I finally thought that I should find out if I, too, have EDS. Also, if I do have it, am I doing everything I should be doing? Or am I overdoing it by training too much?

Thus, last Tuesday, I walked into a the geneticists office for my long awaited appointment (I scheduled my November appointment in April of this year) wondering if they were going to look at me and tell me I needed to “Suck it up, Buttercup. This is normal.” Or if they would tell me there was a reason for all the PT.

Now, what happens at a genetic appointment? That’s a great question. Seeing as how I was at a research hospital at a major university who is top ranked in the nation, I had not one, but two to four people in the room at any given time. To start, two people entered the room for my initial intake, a woman with her PhD in genetics (I cannot remember if she was a post-doc, intern or full doctor because I was pretty nervous at this point) and a man who works in the lab, but wanted to see the office side of the process (he tested the DNA for the genes associated with EDS). The woman did the interviewing asking me family history (who else was flexible with soft skin, etc.) as well as my symptoms. She then had me stand up and walk, flex my knees back, flex my elbows, and touch my thumb to my wrist, which I didn’t know I could do, but was able to on my left hand – weird!

At some point, she said, “Do you have a good physical therapist?”

I almost cried.

Why? Because all of my normally developing friends have at some point or another asked or questioned why I have to go to the physical therapy so very much. And I can only reply because my Posterior Tibial Tendon is inflamed again because I did too much too fast (which means that I tried to keep up with that person’s training regimen). Or my right knee (patellular tendonitis) is inflamed. Or my right shoulder is inflamed. Or my left adductor is inflamed. You name it, it’s been inflamed due to repetitive stress injury.

So, when I walked in and the geneticist looked at me and confirmed that a PT is not only helpful but necessary, I finally felt like I wasn’t making it all up.

Flashback: When I was about 8 years old, every time my mom and I went shopping at an outlet mall or other LARGE area of concrete flooring, my feet would nearly bring me to tears because they hurt so bad. My mom did not always believe me, and sometimes I thought that maybe I was making up the pain – maybe this was what everyone felt, and they just handled it better than I did. Maybe I was just a cry baby. “Suck it up, Buttercup.”

However, in one fowl swoop, this doctor had made me realize that I had not and I am not making any of it up. It’s for real. Running for longer than three miles hurts, while run/walking for five miles is GREAT! Cycling is GREAT! As long as I have not inflamed my PTT from running too far first. Taking a six week training class to help improve run time is a disaster. Working out with a group to train for a triathlon, not always a good idea. But working out with a trainer who makes a program just for me is GREAT! Etc.

Back to the appointment, the initial geneticist and lab guy left and returned a few minutes later with Dr. Byers, the genetic guru, and another woman (genetic counselor). Dr. Byers went over an abbreviated version of the previous interview, then he examined my skin, felt for muscle tone (backs of my shoulders were a little flat – nothing some swimming wouldn’t correct), and asked me to walk. We talked about my club feet (could be indication of EDS or could have been due to my mom’s uterous being twisted), my small upper pallet (I have heard that this could be a trait, and both me and my brother had it – although he didn’t really seem to be too impressed with that trivia), and my yoga abilities.

Then, Dr. Byers said that I am definitely hypermobile, but there is no genetic test for it. He would not say that I am full on EDS, but there is definitely hyper flexibility in my joints that can lead to early onset arthritis and other difficulties as I age. He also said that my strength training was phenomenal. (Yay!) He then told me that I should swim because it is the BEST activity for joints around. In addition, he regularly swims at my neighborhood pool. Really? Great! I used to swim, but just haven’t in a while because getting back in the habit is really difficult. Blah, blah. Suck it up, Buttercup! Ready for the pool? 🙂

Now, don’t think that I am disappointed in having a non-gene specific hypermobile syndrome. Quite the opposite. By having this type, I am not in danger of having the Vascular Type, which can cause ruptures in artieries, veins and other organ tissues; nor the Arthrochalasia Type, which involves lack of muscle tone; nor do I have a type associated with gum disease and dental problems.

No, I am hypermobile. AND as far as hypermobility goes, in reality I am not THAT flexible. I will say that if you see me in a yoga class, you will likely think that I go all the time because I am basic yoga flexible. There is not a basic pose that I cannot do (except for pigeon on my right hip because that hip is tight). However, my secret is that I go to yoga on average probably one time per month. What?! How can I ALWAYS palm the floor without bending my legs, if I’m not practicing stretching everyday?

Well, turns out that if you have hypermobility, you can do that. Yay!? Now, don’t go celebrating or getting jealous at my near perfect downward facing dog. What does it mean to have hypermobile large joints?

It means that on a regular basis, I can get my large joints (knees, elbows, shoulders, ankles) off track. If this happens over and over (think walking with your kneecap moving slightly off track each step), then the muscles that are taking up the slack for the weak ligament (ligaments, in my case, are where my affected collagen are located causing the ligaments to be stretchier than is helpful) become inflamed. Another thing that happens is that if my muscles get too strong in one place and weak or not balanced in another, my poor stretchy ligaments cannot hold my joint in the correct place. This happens regularly to my shoulder joints. But more on that later.

Basically, I learned that I am not crazy. I am not making stuff up. I do not heal as fast as others, which is why I cannot follow as rigorous of a training schedule. I have to give myself time to heal between workouts, etc. So, yes, running two times per week is all I can do. Yes, strength training two times per week is great! Putting a cycling or yoga class in another day will work. AND YES, taking that extra day off if my PTT’s are hurting is fine. I’m doing it all in the right way. Listening to my body is the only way to go.

So, here’s to hypermobility. Thank you for letting me know that I’m not crazy and training slowly is okay.