This post is mostly about EDS and how I'm working through the issues. If you don't care about the EDS, you can skip this one :). I promise to not make this blog ABOUT the disorder, but some of this needed to be said. Sorry this is a long one.
Ehlers Danlos Sydrome (EDS) Type 3 is my diagnosis and I'm not letting it define me, however I am learning about it and it is part of me. I've spent the last few months (among other miserable things), researching, moping, scaring myself, and eventually accepting.
The internet is a wonderful, but also scary place. I can't imagine getting this diagnosis 15 years ago, actually I wouldn't have received it before the internet. So many people are mis-diagnosed. I've been lucky! My doctors listened to me and confirmed what I discovered. I've had two physicians confirm my "Mild" EDS. I read way too much and was way too scared about what could happen to me. I read way to many things about people in wheelchairs, braces for every joint including their fingers, living in chronic pain, giving up their dreams, giving up work, active lifestyles, etc. I spent some time really being depressed about this, as I'm sure everyone that first gets this Dx does. Then, in Laura fashion I said "yea no one tells me No"...
I am clear from cardiac and neurological issues for now, thank god! I just have to worry about the joints. An EDS persons' ligaments are like worn out hair scrunchies, yea they sorta work and it depends on how you place them. The connective tissues in our joints are screwy and allow the bones to 'fall' out of place. All my life I thought this was just something cool I could do. Now with physical therapy, I realize that moving a joint outside its normal range of motion actually causes damage, and eventually osteo-arthritis. (If you know someone that does this, please tell them to stop)!
About 10 years ago I went to an orthopedic doctor because I thought I had arthritis in my knees, well now I know what it is! I learned that my knee caps sometimes sublux and are slightly out of place. I read and know of people where the entire knee is completely out of whack and they can't stand up though! (Thank god I'm not there)! The bones in my feet sometimes go out of place and make it really painful to walk. I can put most of my bones back in place but the bones in my feet are pretty difficult to put back. Most of the time I can just grin and bear it. I have my closet of pain killers, and luckily I have understanding physicians. Many physicians do not believe EDSers either because they don't understand EDS or they think the person with EDS is a hypochondriac (EDS isn't Refereed to as a ZEBRA for nothing.. it sounds like a horse, there are hooves, therefore it must be a horse.. ).
I learned that exercise keeps me in less-pain. The last couple months have been very frustrating and I just threw my arms up and became a lazy louse! It really made my joints and muscles hurt ten-fold! Lying around really takes a toll (in addition to packing on the pounds). I can literally feel the atrophy! EDSers- if I have to say one thing its EXERCISE, even the smallest, controlled movements help!
I spent the better part of last year learning to Chi-Run, working out, going to spin classes, and doing triathlons. It was AMAZING to learn how my body was compensating for its deficiencies! I thought I was strong, well I guess I am, but not as strong as I thought! My larger muscles such as quads, bicepts, tricepts, etc just work overtime and compensate for the smaller ones that don't want to work. I learned why my gluts and piriformis (muscles in my butt) would turn off or get these crazy knots/spasms in them - well they were working too hard to compensate! I have to use foam rollers and go to a massage therapist regularly to have fascial releases (very painful massage). People that think they've had deep tissue massage have NEVER EVER had a real deep tissue!!! I've never given birth to a child, but I suspect its up there with that pain ;). The end result is great though (in both cases most would argue).
I started seeing a Physical Therapist, she isolated my muscles and showed me just how weak I really am! Let me tell you, this is demoralizing! I have to do exercises to strengthen my back (bent over a ball, arms out behind, in a T or up in front), with zero or 1 pound weights.. yea pathetic, eh? Overhead press? Yea, had to relearn how to position my shoulders. I have to move more forward and use tiny-ass weights!
Before the diagnosis, I was just powering through this exercise before with my old weights using the wrong muscles, and it was wreaking havoc on my joints! Recently I felt terrible when I went to a boot-camp class and someone looked at the pile of weights and saw a 3lb set lying there (yes 3lb). This person I respect laughed (she didn't know they were mine). I will never again laugh at someone using small weights. It's not about how much weight! And lesson learned, you really never know what's going on so don't judge!
Probably the most ridicules thing was learning I have a bobble head. Yea sure I can lift my head up, but when isolating the muscles in the front of my neck, I discovered they are MUSH, mashed potatoes, jellyfish, (insert your own adjective).. I could not lift my head up to isolate these muscles and hold it for 15 seconds- YUP FIFTEEN SECONDS at a time. I was like COME ON! REALLY?? I can swim for miles and I can't hold my head up??
The body really is amazing in its' ability to compensate! I'm slowly building myself up to being able to hold that for 1 min at a time. CRAZY! EDSers, if you are doing this exercise, or anything really - we all do this - we poke our chins out instead of tucking and lifting. This is the KEY to my migraines, when I do the "poke", I knock out the vertebrae in my neck and cause them! I constantly correct my posture now. I always 'sink' into my body too, I find myself completely sunk down in my shoulders and chin jutted in toward the monitor (ok how many of you just straightened up?).
I'm also SHORT, so cars, desks, even restaurant booths are really not made for short people making getting ergonomically correct IMPOSSIBLE. I am a constant fidget! I learned that I'm doing this because my joints are just moving around so much! I wish I had this comeback for all the time my mom asked if I had "ants in my pants." or "Laura why can't you sit still?" -- "well mom, it HURTS!" (she never believed me)..
I've learned that even though my body CAN go way out of range, I shouldn't take it there. Also I've learned that I can't stretch like a normal person. I have insanely tight muscles (the big ones that get overused) and the joints are so mushy that I can't get a proper stretch. I've learned to modify. I used to take my leg and basically put my knee and ankle up my nose to stretch my glut. Well, this stresses the crap out of my hip.
I have learned to keep my hip where it belongs, this means having a real awareness of WHERE it belongs. It also means working out in front of a mirror. I really HATE this too.. last thing I want to look at is how much weight I've gained, and I somehow think that everyone around me is thinking "is that woman so vein that she has to watch herself work out?" but gotta do what I gotta do! In order to stretch my glut now, I have to use a foam roller and do it like a normal person even if I don't "FEEL" the stretch, moving out of the socket is BAD. I had no idea I was even doing this!
I learned I have an extremely exaggerated curve in my lower lumbar spine, to compensate for this, my hip flexors shortened and were rock hard. Over the years they stayed that way! When working out I was told to do a "pelvic tilt" - I would somehow bend my knees or squeeze my butt to get what I "thought" was a pelvic tilt. When going to the physical therapist, she asked me to do this knee bend squat that included a tilt, and I could not do it. I've never been so frustrated. It was like telling someone to rub their belly and pat their head and giggle as they couldn't do it, I felt so stupid!! Why was my body so uncooperative!
I went to the massage therapist and had a couple sessions of pretty painful work done on my hip flexors and she was able to release them for me. OMG!!! what a difference. My legs work properly now! WOW!They haven't moved like this in 25 years! I can now do that squat, and I learned why I run like a duck in Chi Running (check out the chi running posts if curious).
I learned I have never done a proper plank! This is particularly related to the hip flexors! They now FLEX MY HIPS - imagine that? I can do a pelvic tilt, squeeze my shoulders and get into a plank! Amazing! I am still having a lot of trouble with the side plank. I'm "Hanging" on my shoulders somehow. I have this same problem in the spin class, somehow I'm leaning on my shoulders but not distributing my weight or engaging my proper muscles. It is unbelievably frustrating.
I really have learned a ton in the last few months. I have to think about SO much when just MOVING, well I have to think even when laying or sitting on the couch. If I sit on the couch and my head is pushed forward, it will knock my neck out of place and cause a headache. If I lay on the couch on my side my shoulder will fall in on itself and my hip will also hurt. I have to be careful no matter what I do and I have to think about my body placement and posture no matter what!
If anyone that DOESN'T have EDS is still reading this, think about swimming or running and how you have to think about where your foot strikes the ground or where your body is while swimming (where does the arm enter the water), well that's what its like for EVERY SINGLE JOINT in an EDSers body.. we have to think about all of them because they don't go where they're supposed to go on their own!
If you have EDS and want to know more about the exercises I described above, check out the facebook page above to find me...or message me and I'll give you the details!
Well.. here's to it.. I made it to the gym yesterday, and I'm back on track!
How I was diagnosed
Very honest and powerful! Keep up the good work Laura!
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