Wednesday, September 1, 2021

Connective Tissue Disorder (EDS) and Exercise

Neighborhood kids would call each other over to see me do the splits, all the way, without effort, when I was four years old. 

That ability remained, along with the weird, bend my thumb back around to the other side of my arm thing, ankles that could twist, doubled over and around, over nothing and go right back, but it was not until many years later that I discovered these were the result of a debilitating condition that meant that the springy parts of my youth were now the cranky parts of my body. 


Give up knitting? Not a chance.


No one talked about EDS (Ehlers-Danlos Syndrome) or connective tissue problems when I was a child. I was called "double-jointed" and surgery was mulled over to break and reconnect my legs to my hips properly so my feet would not turn in. Gosh, I am glad that one was vetoed by someone smarter than the doctor. 

I was given boots on a metal bar to wear at night and strengthening exercises with a stretchy band made of 3" wide elastic by my inventive grandfather. I learned to pay attention to how I walked and carried on with life. My husband joked that I should have come with a warranty, parts and repairs included.

Today, I would not dream of trying the splits. I am pretty certain I would not get back up in the same shape as prior to the attempt. All vainglory and ego then pain and remorse. Not to mention the shame as I am helped into an upright position and straight into the ambulance. Nope, not for me.

That does not mean I surrender to immobility. There is a cycle to connective tissue problems. There is healing and beginning again and building up to where you had been. 

It takes patience with your own limitations, and compassion for your situation. This is not to be confused with self-pity, although that is an acceptable sentiment one might indulge in for a half hour or so. 


My teensy-tiny weight set

I yielded to that just this morning, as I was obliged to pick up my 1 lb. pink (was it really necessary to make them bright pink?) dumbbells again. This is how I make it through my favorite class, Body Pump, chosen because it requires truly minimum coordination. I wanted to move and to build bone density. This has not prevented me from being hurt. But one injury does not need to spell the end of working out, of walking, of stretching and being active. 

Life is in constant movement and if I am not part of the flow, I am missing something.  


Experimentation, Failure and Trying Again

Last week, feeling like a change was due, I tried a shorter weight-lifting set with heavier weights. Experimenting is good. Or not so good. Wrist fine. Feet fine. Shoulder not fine. That is why it was back to the baby weights today, which would have been humiliating at a different time of my life. Now they are a testament to determination in the face of elements beyond my control.

In 2020, I tried cortisone injections in my foot and wrist, with varying rates of success. The pain relief was fabulous at first. And as long as I chose not to knit or lift any weights, it was total. (Bwahahahaha!) I had one more round in my feet the week before I got the news that I tested positive for osteoporosis. 

Osteoporosis is the condition where your doctor gravely tells you "don't fall, you may break a hip, if you break a hip, your chances of dying are 75%" or some stupid statistic, "excess mortality" is the official stance.

This was followed by, "You should probably go on this medication you will need for the rest of your life." When you take a minute to research the medication, it turns out that it has one or two tiny baby little side effects; fracture of the femur from little or no impact and osteonecrosis of the jaw; where the bone is exposed inside the mouth in a gaping hole and does not heal.

One of the major causes of osteoporosis itself? Cortisone and other steroids in any form at all. I had been taking prednisone off and on for inflammation for ten years besides the injections. Since that day, I have not taken any type of anti-inflammatory: oral or injection. (The vaccine for COVID is not that sort of injection, I have had that!) I see a functional medicine doctor who works with me as an individual and not as a set of symptoms to treat.

Gloves, do-hickies and other tools tried. A good friend invited me to try these contraptions: New Grips which were made for weightlifting. I like them for wrist support, they are super-nice, and leave your hands in a breathable state rather than ensconced in a whole glove. They allow for too much thumb mobility for my purposes though, so I have abandoned them for now to focus on only gripping what I can keep firmly hold of so I don't aggravate the thumb joint. I have taped my wrist, put my elbow in a brace, used gloves upon gloves (see posts below). My main support today (besides a sports bra) is a good pair of shoes, changed out regularly when the cushioning begins to fade. Must be cushioned. This year's choice has been the Hoka One One, not the prettiest, but lightweight, wide-toed and super-stable to counteract my rolling ankles. Think a perfect green landscape with lovely hills and apply that to my ankles.


When did I first understand there was a name for this set of symptoms? It was late, in fact less than ten years ago. We were trying to understand the pain that plagued our daughter from walking longer than half an hour or so. Her hips hurt, so much so that she was willing to give up seeing parts of Venice on a trip she had dreamed of for years. She and I became expert vaporetti users instead and saw absolutely everything, but when we came back, I started to research what might be going on and took her to physical therapy. The term EDS was bandied about and many mysteries clicked into comprehension. As for treatment, there really is none to be offered for the "benign" problem of hyperextention, hypermobility and being in pain from the smallest outage, so creating more literature, more information and doing my own research on myself has become a way of contributing to the solution.

More from 2018: Hypermobility and Ehlers Danlos and Working Out Anyway

From 2015: Spin on Fitness and Caution for the Hypermobile

I wrote in 2014:  EDS: When it Hurts to Exercise.


No comments:

Post a Comment

Thank you for stopping by. I am always happy to hear from you! Please leave a comment and let me know how you feel about a post or add advice, anecdotes, etc. of your own.