Zebras in Motion

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.

Colleen Ann Guest says:

Update. Now that I’ve started “doing” stairs again I’ve decided that to increase my daily exercise (and spread it out throughout my day) I’m taking the stairs to the bathroom every time I have to go instead of using the one on my floor. Since I’ve greatly increased my water intake, this also means I’ve increased my potty breaks! For the first time in years, I’m enjoying the burn in my thighs (instead of the cracking and painful popping of my knees) from taking 4 flights of stairs at least 4 times a day!

Colleen Ann Guest says:

Even though I’ve been cautious with my exercise and I’ve felt great; I’ve developed water on the knee – no pain, just swelling and stiffness. I guess I gotta quit taking the stairs for a while. Bummer…I was doing so good too!!

Colleen Ann Guest says:

Here is a wonderful website which discusses the connection between food intolerance and disease in both humans and pets.

And visit this page in particular to learn a bit more about EDS and gluten

So your knees are stronger because of the skiing, and therefore you can take the stairs without pain? This gives me hope… .I won’t do a ski machine, I think that would kill my groin tendons, but I might try some low impact “dancing” using moves approved by my physical therapist, on a padded floor. I hope you’ll post back if you start seeing anymore results, especially negative ones.

Colleen Ann Guest says:

Molly, so far so good. I’ve added a few light isometric exercises that also help strengthen the muscles in my legs, core, and arms. And I do mean just a few. I think the key for me this time around is taking everything very slow and only adding little bits at a time. My knees aren’t healed and neither are my hips, but they don’t scream at me daily now and they don’t fall out of joint (or try to) when I walk and use the stairs. You need to find what works for you and do it at a pace that doesn’t cause problems. I’ve always been the kind of person that dives into a new activity with fervor, so doing something over several weeks at a pace a toddler could outrun is not natural for me. But I’m still seeing positive results. My energy level and mental outlook is greatly improved. Please share your results with me too!! Blessings!!

Colleen Ann Guest says:

Well, a few months have gone by. My ability to follow through and stick with the routine I started just isn’t what it should be. So this week I started taking a fitness boot camp class. I informed the instructor of my EDS and he’s modified the exercises that put stress on my joints. While my muscles are screaming at me right now, my joints are (so far) staying put. I think because I started on my own a few months ago, I already had a little base to work from so my connective tissue isn’t taking all the abuse it would have. We are working out 3 days a week at 6 AM. I’m on day 2 and I feel totally invigorated …. and totally in pain. But a good pain. I haven’t felt that muscle burn in years! I WILL regain my strength and muscle tone and I WILL be better for having done this. Sometimes I think I let my mind (and knowledge of my disorder) get in the way of actually doing things that might hurt. We have to push through some pain in order to reap the benefits don’t we?. I am in high hopes I won’t dislocate/sublux anything and by the end of the 4 weeks I’ll be in a much better place physically than I’ve been in 10 years!

Colleen Ann Guest says:

a Couple of weeks ago I finished my first month of fitness boot camp with no injuries and I feel fantastic! After 11 days off, the second month kicked off yesterday. I tried to rest as much as possible on the days off between the sessions but I felt so good I actually ran about a mile and a half on 5 days and went roller skating once for the first time in years!! I can’t begin to tell you how happy that makes me – I LOVED roller skating in my youth.

I had to laugh when my instructor mentioned to the class, “she’s our bendy one” as they marveled at how I could reach some ridiculous poses during stretching/cool down. Being extra bendy isn’t the worst thing in the world. Just gotta keep strengthening. Honestly, getting started was the very hardest part. Once I got on a roll with it (and it took MONTHS of working on my own before I could even start with an instructor), it got easier and now I can’t imagine stopping.

I am slowly regaining my muscle strength, I’ve gained 5 pounds (much needed!), my brain feels sharper, and my overall sense of well-being is vastly improved. Between eating whole foods and no grains; supplementing with magnesium, Vit C, and Zinc; and the exercise; I think I am making real headway into staving off symptoms of Ehlers Danlos and Celiac, and dare I say it: REVERSING some of them? It sure feels like it. I’ll take that.

Madora Pennington says:

Good post! We have to keep moving and stay strong if we can.

Colleen Ann Guest says:

Thank you! You have been a great encouragement lately! I love knowing there are fellow EDSers out there who are not giving up!

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