My EDS Challenge: Day 3 Symptoms in Life with Ehlers Danlos

  • May 3, 2021, 12:04 p.m.
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I am taking part in #MyEDSChallenge 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 3 of the challenge: Share about your symptoms.

My symptoms started when I was a small child. I could never verbalize the post void discomfort i felt (after peeing) in the urethral/ bladder area. I would start to have anxiety around going to the bathroom as a kid. Something was just WRONG after I went to the bathroom. I had weird burning pains and as a child you can’t describe that the feeling is INTERNAL so doctors naturally thought I just had an infection and I was too scared to keep talking about it so i remained silent and thought this shit was just normal. I also had issues with feeling faint upon standing, unprovoked heart palpitations, ear ringing, extreme joint pain and restless leg syndrome that would keep me awake for NIGHTS on end. People seemed to think these were “just growing pains” or “she just has anxiety”. I feel like I kept getting hurt way easier than most people in little ways. But I learned at a young age that I cant do things like other people so I became overly cautious and avoidant of doing certain physical things. I also found to get tired way quicker than normal people. Okay somethings wrong here but what the hell is there to do about it? I was just taught that I am a sensitive person so I feel things deeper. Fast forward to adulthood, early 20’s. I had undiagnosed anal fissures and was still dealing with the pelvic pain episodes. I was told I have IC, IBS whatever. Things were pretty consistent up until Oct 2013 when my pelvic floor finally spasmed really badly. After that I was left with left sided neuropathic pain in my pelvis and what I came to research as pudendal neuralgia. I deal with neuropathic pain symptoms in my pelvis, legs, hips and really the entire left side of my body is affected due to centralized sensitization of the nervous system. I was hyper focused on my neuropathic pain, and finding experts to treat it. I did a bunch of stuff to rule other things out. I tried steroid nerve blocks and botox injections. I traveled to Arizona for a rare and controversial surgery that not many people have right before the lockdowns started in March of 2020. I became an expert on pelvic anatomy very quickly and my research began then and never stopped. But I also had really weird gastrointestinal dysmotility, issues with solid food, vascular compressions, easily bruising, inability to gain weight , chronic fatigue, POTS, constant muscle tightness and spasm. No amount of treatments and PT could make this go away and before too much time I realized this was a WHOLE BODY ISSUE. I have seen a total of 36 specialists other than PT’s and they all gave me diagnoses to describe my symptoms but none to explain WHY all this shit was happening to an “otherwise healthy” 24 year old. I have to really pace myself with physical activity and I cant remain in one position for too long before I have to deal with neuropathic pain. I also have to be careful about eating too much solid food at once. I am at a point now where I have accepted that there is no fix for this and I have to cope and manage this on my own.

Some folks have asked me if I have a medical background. And my reply is “well I do now” =-)

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