Ehlers-Danlos

There are so many out there like me that suffer from chronic pain and have fought through and may still be fighting through diagnosis’s and doctors not believing them. This is why I’m sharing my story, to let you know you are not alone and to give you hope to keep fighting.  I wanted to explain about my genetic disorder called Ehlers-Danlos Syndrome (EDS).  Since this is the only body I’ve ever had (I know, shocking) I assumed that everything I was going through was normal.  I would like you to know the basics because a lot of what I’m going to talk about deals directly with how this has effected my life.  With that here’s the least gibberish explanation I can give.  Some one once compared a body with EDS to a building being built with rubber bands instead of nails.  In other words you are going to have some major structural issues.  Basically EDS is an issue with the collagen, which is the number one used protein, in your body.  It’s used in almost everything, veins, arteries, intestines, skin, ligaments, tendons, you get the idea, it’s a very important part of the human body.  Because it is systematic it effects everyone differently.  My son and dad both have very stretchy skin but I don’t; all of us have issues with our joints though.  EDS literally wreaks havoc with your whole body, but the symptoms I fight the most are my ligaments and tendons, they are too stretchy so my joints sublux.  Think of a transmission on a car going out, subluxation is like the gears slipping and grinding, but not fully breaking loose.  Some joints are worse then others, my back has been one of the biggest issues so far.  At the ripe old age of 37 I had multiple discs that had degenerated, arthritis, and a fusion of L5-S1, but I’m jumping ahead in the story.  

My whole life I’ve gone from one medical issue to the next all the while just assuming I was weak and needed to try harder to suck it up.  For examples I used to roll my ankles so I could stand on the outside edge of my feet because they hurt and some how standing on the sides of them was more comfortable.  I went to do this one day at work and caught the edge of the mat I was standing on and rolled it all the way to where my ankle was resting on the floor. It hurt right away, but I carried on assuming I was making something out of nothing. By the next day I could hardly put weight on it.  Long story shorter, I ended up pulling the tendon that runs from the pinky toe under the foot to the ankle.  Doctors kept misdiagnosing it (if I had a dollar for each time a dr told me I didn’t fit in “the box” I’d be rich) and so the problem got worse and I ended up with a nerve condition called reflex sympathetic dystrophy.  Basically the nerves were sending the message that the bones in my foot were broken even though they weren’t.  So even after the tendon healed there was still a ton of pain.  Try explaining to someone that your foot is bruised and swollen and you’re on crutches because your body thinks your foot is broken even though it’s not.  The inability to heal after surgery, the low blood pressure that makes the nurses look at me every time and ask me if I’m alive, the rapid heart beat, the inability to sleep at night, the constant stomach issues, the headaches and migraines, my ribs and hips slipping, the painful periods (my lining would attach itself to the muscles in the uterine wall then rip away with each period), my inability to tolerate most meds, scoliosis, all of these, and others, were due to EDS.  

In June of 2017 I ended up with a blown disc in my back (story for another day) and went to a new doctor.  During our consult I was squatting on the floor because I couldn’t stand or sit without extreme pain.  The physician assistant noticed how low I was squatting and started wondering about EDS due to the hyper mobility in my hips.  She mentioned it to the Dr. and the first things he asked me was did your joints hurt as a child?  My response was of course, isn’t that normal?  He laughed and shook his head.  He briefly explained that being in pain all the time is not normal and that he’s 99% sure I have EDS based on my medical history and a flexibility test he did in the office.  There is no cure and nothing really you can do other then stay on the defense by working out and learning how a normal body moves and trying to not hyperextend any joints.  He handed me a pamphlet and told me to go home and do research.  I got in the car with my husband Daniel and started reading the symptoms and affects of EDS.  It was like reading my life’s story.  I started to cry out of pure joy because finally there was an explanation to the years of pain and it wasn’t all in my head like some doctors had stated.  I cried also out of anger that there is no cure and it will more then likely progressively get worse.  The roller coaster of emotions were crazy to say the least.  As I continued to do research and talk to doctors I also found out that I had passed this lovely gift on to my son.  When I told him about it he went through all the same emotions, elated there was a cause and saddened by the lack of a cure.  The good news is with him he’s young enough that he’s starting right now to workout and learn the do’s and don’ts of EDS. 

I don’t have all the answers to all my symptoms and the longer I go the more acronyms and big medical words keep getting added to my list, POTS, MCAS, dysautonomia…I can talk doctor pretty good now!  My hope for this blog, is that I can walk with you through your chronic pain or whatever hurt life has or is throwing at you.  That we can encourage each other and help carry each other’s burdens.  It’s hard to open up and admit that you can’t do it alone, but I’ve found strength in honesty.  I won’t have all the answers but I can listen and be there for you if you’ll let me.  Please don’t hesitate to reach out.  Let’s do this thing called life together.

One thought on “Ehlers-Danlos

  1. I hear you, sister. I am very thankful that my mother taught me to build muscles when I was young (I’m pretty sure she has EDS and is how I got mine). As a result, I lived fairly normally without knowing I had hEDS until I injured my back when I was 36 or so and it didn’t seem to heal and the pain never left.

    I’m having more issues now since I’m getting older and these muscles are weakening due to age. I am starting a gentle physical therapy in water soon to hopefully help build them up again.

    Liked by 1 person

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