EDS and All Things Zebra

“Try to exclude the possibility of suffering, which the order of nature and the existence of free-wills involve, and you find that you have excluded life itself.” 
― C.S. Lewis, The Problem of Pain

In August of 2021, I was diagnosed with Hypermobile Ehlers-Danlos Syndrome…or…hEDS.

Most of you may be saying “hypermobile what?” and then some of you may be saying “Hey me too!” – It’s funny that way.

The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility. 

ehlers-danlos.com

There are many ways I could start this blog. I could jump right into a load of medical jargon, or I could go into the history of how I found myself with a diagnosis. I had to ask myself two questions: (1) What is the point of blogging about EDS, personally? and (2) If I were reading this with the intent of trying to understand Ehlers, whether for myself or someone I knew, what would I want to know?

For me, the reason behind all of this.. the blogging, researching, talking to others either with EDS or with medical experience and knowledge of EDS…is because I want to help.

So with that said, I’ll start with what my day-to-day is like and what some of my biggest symptoms are. That is where everyone starts their first search; “Why do I feel this way and does anyone else feel like me?”

MY BIGGEST SYMPTOMS + MY DAY-TO-DAY

• Every morning, I wake up with general pain all over my body.
  
  • Some days, I don’t want to move and all I can focus on is the pain. Some days, I forget all about it and realize “ oh wow I’m doing much better today!” (That doesn’t mean I’m not in pain. It just means I’m not registering it at this point because it’s at a low enough level. It’s rare to wake up without pain.)
    
• Brain Fog.
  • Some days it’s not bad, some days I can barely function. Whether it’s because of medicine I take, symptoms from other comorbidities or just exhaustion, it’s something that is in my life on a constant basis.
    
• Neck pain
  • As most things are with EDS, this one is complicated. I have some version of neck pain every day. It used to be really bad but after some physical therapy and starting to take Zyrtec everyday (aka MCAS/inflammation; I’ll explain at another time), it seems to be helping. Now this is also with taking narcotics on a 4-5 hour rotation so always keep that in mind.
  • There are a couple different reasons for my neck pain which I will get into at a different time.

• Stomach pain, bloating, gas, GI issues.
  • This is mostly related to my MCAS (undiagnosed but my doc is medicating me as if I have MCAS. Thats one of the best ways to determine if you have it. It’s a histamine intolerance issue. More on this later.)
  • I take meds in the morning and in the evening to help keep me from having reactions to all sorts of things, mostly foods but not always. For example, there’s an oral mouthwash that caused me to completely crash, causing my husband, Eric, to have to stop working and watch the kids. I either feel pain in my stomach, have lots of bloating and/or burping, rosacea/flushing, higher temps (also related to dysautonomia), tachycardia, complete loss of energy, breathlessness, major brain fog, nausea, diarrhea, the list goes on.
    
• Exhaustion / Fatigue
  • Exhaustion being from doing normal chores around the house and it wears me out more than it should.
  • Fatigue being tired for no good reason either all day or at different times of the day where I can barely do anything.

Well, this is where I am going to stop for now. I will be going into detail about a lot of the issues I have, why they exist, how I treat them, etc. I’ll be discussing a lot that I have learned such as the possible – or one of the possible – underlying cause of EDS as researchers have been studying this. I’ll be discussing long covid, paxlovid and EDS. This is just to name a few things. My biggest hope is this can help someone, somewhere.

… If you want to know more about what EDS actually is, This is a great place to start….

Take Care, Lovelies. ❤