MY EDS Challenge Day 14- My favorite EDS life hacks in Life with Ehlers Danlos

  • May 14, 2022, 12:37 p.m.
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  • Public

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.

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Day 14- My favorite EDS life hacks

This first hack is kind of strange but it is much needed for me. I suffer from bad neuropathic pain due to pudendal neuralgia, the main nerve branch in the pelvis. This causes a lot of stinging, stabbing and shooting pain in my tailbone area and under my legs. Driving, for me is generally a very unpleasant experience and I can only do it a little at a time on a good day. On days when I have to drive, being at a stop light and feeling the small frequency vibration of most car engines amplifies my nerve pain. Putting my car in neutral at stop lights reduces the vibrations. Unfortunately this doesn’t work in every vehicle but it works in mine!

I also try to use ice and a seat cushion on whatever chair I need to sit on. It’s quite annoying having to carry it everywhere and it’s not a guarantee that it will help with the pain.

Another hack is to have an emergency pain bag to bring with you to places. Have everything in a bag ready to go in case of emergency travel.

Items:
1) Ice packs
2) Heat pad
3) Electrolytes
4) CBD cream/oil
5) Compression garnments
6) Massager tools
7) Cushion or pillow
8) KT tape
9) Salty snacks
10) Tens unit
11) Braces
12) Meds


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