EDS and fitness, for those with health problems

FisherGT
FisherGT Posts: 55 Member
in Getting Started
Hi, my name is Gabrielle

I have a degenerative condition called Elher's Danlos syndrome which essentially means I'm living in a body that is quickly becoming more and more damaged as life goes on. I live in chronic pain and my rheumatologist has told me that it's best for me to try to get as light and fit as possible to slow my bodies degeneration. So here I am! I lost 18lb since last year after my surgery to repair my hip. I am just starting to feel myself. Getting a little stronger every day.

Does anyone else deal with this? Or have this condition on the moderate to severe side? I know it's something like 1 in 5000. I get discouraged a lot because my body hurts so badly. fhp5h1savobb.jpg

Replies

  • nancy939393
    nancy939393 Posts: 12 Member
    I have EDS (probably type I), never been genetically tested but have 8/9 on beighton scale and some healing issues with injuries taking much longer than they should to heal. I have the bruising at nothing, tons of scars and all that. Mine has caused some issues but it's low-moderate. I do have to be careful when I increase my workouts especially with my right knee which tends to go out of joint so easily. I can put it back in myself generally now though. I take ibuprofin every day and am often still sore, and I have been on prescription NSAIDs for years at a time, and worked really hard to get off of those.

    I know its hard for me, and mine isn't severe, I can imagine what its like for you.
  • day1daily
    day1daily Posts: 1 Member
    Brand new on here. My son has hyper mobile type bad. 9/9, 19 years old and uses a variety of mobility tools. My score is 6/9, mild but it took me 48 years to realize I need to be as light on my joints as I can! Getting new hip next year. The stationary bike is my bff. Nice to meet you!

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