For Those With Eds

[delphicdragon]

Hey Everyone-

If you have EDS and are a member of EDNF, you probably get Loose Connections which is a quarterly Newsletter. This month's issue, page 16, has an article in it that I wrote. It's called The Zebra, and it's about my journey to get diagnosed with EDS.

Enjoy!!

Sara

I would post a link, but I think it's against copyright.

[Maxine]

Nice Article! It's a good metaphor for EDS patients.

Yesterday I had a bad fall, and I was wondering is this POTS or was it my EDS? My ankle turned on me, but I was on the last step going into my basement, and went to step on the floor but my ankle was completely turned. It hurt so badly that I went down like a ton of bricks. I injured the ankle, the top of my right foot, my right knee, and my left thigh. It wasn't clear to me if I may have had a drop attack because I had a headache from my cervical/cranial instability.

I get used to feeling the pain, and the weird walking gait. The part that you keep saying your running with the herd-----------that's exactly what I try to do, and as I do, I learn to adapt and build a tolerance to pain-----------I end up getting used to pain as part of my life. Sometimes I'm in a dumfounded state when the pain gets worse thinking, how can it be worse then what I have now? Now I have to become adapted to more.

Did my POTS cause me to be unaware of my footing, or was my ankle floopy, and I just fell from the shock of the pain?

I dropped so fast, I was stunned. I cried my mascara off, more so from frustration then the pain.

I used to think of the PAIN as PROOF that something was wrong, but the medical profession doesn't care, as they think your faking that too, or at least over dramatizing--------------so I rarely bring up "pain" as part of our conversation.

We mainly focus on the joint instability and what it's doing to my spine, secondary neurological problems from the spine issues & lower brain stem compression, or the pots issues.

Each day I realize just how serious EDS is, and how much we can appear to look like everyone else.

Maxine :0)

[BelieverEM]

Thank you, Sara, for bringing attention to the EDS/POTS connection. After nearly a decade of suffering, I've only VERY recently realized that I have POTS, thanks to other EDS patients who have talked about it. I'm socked that none of the doctors who treat my EDS complications, including my 2 cardiologits, have caught it! I wish there was an easier way to bring about awareness so that we did not have to suffer so long without a diagnosis. Still, I am thankful that patients like you have shared their own stories, to inform within the community.

Thanks again,

Erin