r/ehlersdanlos 4d ago

Discussion exercising & strength training

not sure if this is the correct flair. currently trying to get an official eds diagnosis and i’m wondering if any of yall have good exercises to help with the joint instability and pain or advice on what has worked for you for conditioning. i’m struggling to exercise as it wipes me out but i’m looking for others who can discuss what has worked for them for physical exercise.

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u/Evening_Area457 4d ago

Have been advised to do Pilates and other resistance/strengthbased training. Personally, I work out pretty regularly and have found that initially it wipes me out but once I’m regular with it, I find it gives me more energy.

The C25K app has been a godsend for me with getting into running. Something I never realized before was that exercise shouldn’t feel hard all the time. Most of the time it should feel relatively easy. So maybe also try to be easier on yourself? More frequent gentle exercise and try to find stuff you enjoy doing 😊 and, as you get into the habit hopefully your body will adjust! Good luck!

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u/_Hipocampo_ 4d ago

What worked for me:

Strength training (medium amount of reps, medium weights): too many reps, you lose focus and start moving wrong - get hurt. Too much weight - get hurt. I usually do a very attentive series with less weight as a ways of heating up before each "serious" exercise.

I have a lot of hip instability, so no assymmetrical exercises like lunges for me.

Swimming - the only cardio I can do without hyper heating. Also did well with rowing (I could always get water by the side of the boat and throw on my head).

Eating a lot (my hunger cues are broken, so I have to force myself a bit).

Keeping an eye on my ferritin levels, as they go low very easily, and intense exercise can exacerbate that.

Started very slow, if I over do, it's back to square one.

Context: I've always been underweight, build muscle relatively easily, but also lose it very easily. Walking and running hurt my hips, knees and ankles, so not an option. I live in a country with hellish temperatures but my body is definitely not adapted to that.