EDS? Could it really be??

Almost 20 years and I think I finally solved the mystery of me. My life, health issues, falling apart so young. Why joining the military screwed me up physically and I’ve never been the same. I never bothered to researched genetic diseases. As far as I knew, my parents and grandparents were healthy mobile individuals with very little in the way of health issues so it couldn’t be that…..

Then my Rheumatologist told me I was hypermobile. I figured as much since my knees always felt like they would ‘fall off’ which is the only way I could describe the feeling. They feel loose and God forbid anyone touch my knees. They can be painful and even touch can flare them up. No pressure on them even with clothing having to be loose enough and never a knee brace that covers the patella.

I thought it was normal to wash my own back. I thought it was cool that I could push my thumb over and squeeze my hands out of handcuffs. Neat trick. Or move them from behind my back to in front. I thought it was sneaky cool. I could do the side splits and I was very very flexible. And then my pain management doctor told me he’d never seen someone in as many odd positions as he’s seen me in. To me I was just trying to be comfortable. Normal is not comfortable to me. Criss cross apple sauce or other pretzel like positions…

Then my new physical therapist came to my home and asked me straight out if I had Ehlers-danlos… Hmmm. I’d read about it though never intently, I only knew they were hypermobile…. So I researched it via Dr. Google and my jaw dropped my heart pounded and a light bulb went on. Everything from my hypermobility to hernia’s, prolapses, and POT syndrome… It fit. Wow did it fit.

I’ve since asked some relatives about it and no one had even heard about it but we did have a few family members die suddenly of an aneurysm… yikes. Blood clotting issues run in my family as well. Off to the geneticist for official testing! Prayers it’s not vEDS or that I ever have to deal with an aneurysm. My horrific headaches and migraines and chest pains are enough to make me worry about by themselves without throwing the new information into mix. I have enough anxiety as it is… What’s a little more.

6 thoughts on “EDS? Could it really be??

  1. It’s some scary stuff and a lot to wrap your head around. The good news is now that you have a good idea of what’s going on, you have avenues of treatment to explore. You know I’ve got your back! Hope you’re feeling a bit better. Xx

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    1. Thank you. Unfortunately it’s been a downhill trajectory for me lately. I’m a year out for genetic testing but am 99.999% positive I’ve found my people!! My super long list of medical mayhem matches way too perfectly to deny it. My thoughts are stewing on this being lifelong with the amount of pain I’m currently in. I’m going to have to research treatment options. I already have tons of braces (another sign) and just purchased some support tops. I’m hoping that helps with part of it. My neck and back are currently super flared up so not much movement happening at the moment. 🙄 I’m currently curled up in my new sweatshirt, laying on a padded cushion on the floor. By the way, the sweatshirt is super soft. Thanks again for creating it! I wish you much success in this journey called life.

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      1. Any chance you’ve been diagnosed with orthostatic intolerance, syncope, low blood pressure or you get dizzy a lot? Is the head and neck pain into the shoulders and up the back of the neck? Sorry, I should say I might be able to help with some of your symptoms and provide some resources in the meantime, but of course only if you want advice. I hope the support tops help! I have so many! 😊 Thank you for supporting me and the Zebra Pit. I appreciate your kindness so much!

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      2. Yes, shoulders, neck and pressure headaches. My right shoulder subluxed on me a few days ago. I had a massage after and it brought some of my pain down. She spent about 30 minutes in that one shoulder as it wouldn’t release. The muscles are super tight.

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    1. It sounds like it could be either or both. We zebras are so hard to suss out, aren’t we? Make sure you’re getting adequate salt. Without it and we can take what seems like an insane amount, we get what they call “coat hanger headaches” that go from the top of the head through the shoulders. I put sea salt in every glass of water, about a teaspoon in each is what I need, but we’re all different. You’ll need to figure out what works best for you. If this resolves the pain you’re experiencing, awesome! If your cervical instability is to cause, I also have some suggestions there. It’s great that you’re seeing a massage therapist. Ask her about myofascial massage and if she does any. It’s helped me more than any other treatment I’ve tried. I use a FasciaBlaster, which is a self-use tool, but a lot of zebras I know who do it have also gotten massage therapists to work on them with theirs. It helped so much with everything, but my head and neck pain most! Here’s my post on it if you want to know more. Hope these suggestions help get you some relief! https://zebrapit.com/2017/03/07/fascia-treatments-for-eds-and-fibromyalgia/

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