My EDS challenge Day 25- Most Challenging Symptoms in Life with Ehlers Danlos

  • May 25, 2022, 11:41 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 25- My most challenging symptoms

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Every person with EDS & HSD wear this syndrome so differently. The standard presentation of EDS is joint dislocations or subluxations. So whenever someone does not present that way, most doctors wont really even consider an EDS diagnosis. Or it takes a good specialist to see past that.

For years before I even knew what EDS was, I was very focused on my peripheral neuropathic pain. This was pudendal neuralgia, followed by other pelvic nerve crosstalk. This morphed into central nervous system involvement. This nerve pain was my most problematic symptom. The meds I took caused a lot of brain fog and other side effects. I had issues with sitting, driving, and just even being around people when the nerve pain was bad. Since my decompression surgery (long long recovery) this has improved some but I still have bad flare ups. Since the pudendal nerve is part of the autonomic nervous system, it causes a whole slew of autonomic dysfunction.

My second most challenging symptom is chronic fatigue. This is brought upon by so many factors. Medication, weather, POTS, muscle over strain/ achiness, central nervous system involvement in chronic pain, over straining. This effects what I can get done in a day because I have to go lay down and or take a nap more than other people because I am so drained.

My digestive issues are the third most annoying. I am pretty much constantly fluctuating between constipated to running to the bathroom. I have not been able to find any trigger foods, its just usually eating too much or too little. The pressure of food being in my intestines puts pressure on my nerves and blood vessels. Blood pooling makes this worse. If my digestive issues are bad enough this effects my pudendal nerve pain as well.

Other symptoms I deal with: heart palpatations, blood pooling, fainting, muscle spasms, headaches, neck pain, overall muscle pain, TMJ, ear ringing.

Last updated May 25, 2022

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