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Ehlers-Danlos Syndrome and Exercise – The Impossible Combination?
One of the topics that comes up quite often in my Ehlers-Danlos* groups is exercise. We all know we need it and yet it’s so difficult to start or maintain because of the obvious resulting pain, joint laxity, and POTS symptoms. And yet without it we aren’t helping our joints because we aren’t strengthening the muscles surrounding them and we’re not improving our overall health. I’m right there with my fellow EDSers on this and I’ve been struggling for years trying to find something that works. My one constant companion (although neglected more often than not) throughout these past 30 years has been a Nordic Track machine. It’s a wonderful tool because it provides great cardio with ZERO impact! It’s always been my friend – when I choose not to ignore it. A mistake I’ve always made though was to use it in conjunction with starting a completely new exercise routine including weights and dance-like moves which always leads to soreness, joint pain/problems, and ultimately quitting – usually sooner than later. But a couple of weeks ago I made a conscious effort to start anew and NOT get ahead of myself. I’m using JUST the machine 3 or 4 times a week for 20 minutes a day, I’m drinking 80-100 oz of water a day, and I’ve SLOWLY added some stretching and light isometrics. I haven’t experienced ANY soreness and I certainly don’t feel like quitting. In fact, I’ve always avoided stairs like the plague for decades because of the knee pain and possibility of subluxing, but yesterday I purposefully took the stairs multiple times and I didn’t have ANY problems. And still no backlash today! That alone is such a HUGE accomplishment!! If you don’t suffer from joint hypermobility then you just won’t get the full impact (no pun intended) of that last statement. FYI, because of other health issues I’ve had to revamp my diet and I’ve already been eating grain and soy free for 3 years. That has also contributed greatly to my overall improved health and well-being. I also take 4-6 grams of Vitamin C a day and 400mg of chelated Magnesium and 22 mg of zinc. So can an EDSer find exercises to help pain and joint laxity? After a couple of weeks of skiing at home, I’m inclined to say yes – at least for this bendy girl!
*Visit the EDNF website for more information about Ehlers-Danlos Syndrome
I am NOT a medical professional and I do not intend for my statements to influence anyone to start a diet and exercise routine without proper medical care. Please do your own research, clear things with your medical professionals, and find what works for you.