My EDS Challenge Day 28- Managing Symptoms in Life with Ehlers Danlos

  • May 28, 2022, 8:31 a.m.
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I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 28- Managing Symptoms

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Managing sypmtoms is about having a wide variety of tools in your toolbox. You have to be consistent and its really hard to know what causes a flare up these days. I stopped trying to do detective work as to why I have certain symptoms. It started driving me nuts. Often times there are multiple factors for EDS, so its not worth the mental frustration. Here are some of my tools in no particular order of importance:

1) Practice pacing with physical activity. This one is hard because when you are feeling good you want to do more, but it is important to rest even if you are feeling good.

2) Getting enough electrolytes and water. This one can also be hard because the weather plays a role as well as how much physical activity you are doing. Sometimes you don’t know how much to take until its too late.

3) Medication & physical therapy. A LOT of trial and error here. Meds take trial and error and a cost benefit analysis. Sometimes the side effects and little improvement aren’t worth it. With physical therapy its important to find someone familiar with EDS or at least someone who is willing to educate themselves.

4) Setting social & work boundaries. This one is so important! And it doesn’t come naturally. We want to keep doing what we used to be able to do, not what our bodies are telling us is the new normal. Setting boundaries around work and social life, including but not limited to advocating for accommodations, limiting your time doing these things, or correcting someones comments about your disability.

5) Heat, ice, baths, massage, and pain distraction tools- These are all trial and error to see what decreases symptoms any percentage.

6) Rest, naps, and conscious disconnecting- This helps your brain shut off when often times your nervous system is rapid firing.

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