Living with Health Challenges || EDS

Finding you have a genetic connective tissue disorder in your 30's kind of sucks. If you're like me, a lot of preventable damage has already been done and can't be fixed. 

If you find out you have EDS or Elher Danlos Syndrome Hypermobility here is a little advice that might help. 

Get physical therapy.

Abnormal movements and over-extensions of joints can feel perfectly normal to people with EDS. That does not mean you're not causing long term damage. 

This is also to learn how your body is supposed to move, and what overextended looks and feels like for you. In PT, I re-learned to:

  • Walk without overextending my knees. 
  • Brush my teeth without overextending my index finger (seriously)
Rethink birth control

Rethink birth control options and explore hormonal supplements with caution. One of the functions of estrogen is to give the body elasticity for childbirth. We don't need the help. 

If you get an IUD please look into preventing pain beforehand. An IUD has worked very well for me, but it was incredibly painful to place. 

This is what EDS looks like. I took a nap in the floor with the dogs, Daniel got this photo. I look like I've had a horrible fall.

KT Tape, buy some.

Buy a lot. Try different types. Learn to use it. I wear KT tape when doing things that might cause injury, or things that rely on former injured joints, or when I plan on pushing my joints further than normal. Examples: skiing, hiking, golfing. 

The knee tape with the hard bar in the side is the shit. Seriously. I don't vacation without them.

Have other related systems checked out.

Have other related systems checked out. A type of EDS affects the vascular system, another the skin. I have digestive issues because of connective tissues not being normal there. 

Stop Doing Yoga

Stop doing yoga and stretching without advice from PT, as mentioned in #1. 

Start Tai Chi

Start Tai Chi or other slow controlled movement strength building. Your muscles have to take some slack from your tendons. 

Don't join the circus

Don't join the circus, or do, I'm not your boss.

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