The Connective Issue

11/20/2025

Pulsatile tinnitus is what led to my FMD diagnosis. I traveled from SC to Cleveland to see Dr. Gornik because there were no specialists for it in my area, so I figured if I had to travel, I'd go to the expert in the field. Here's her paper, in case any of you need some proof for your providers about how serious the symptom of "hearing your heartbeat in your ear" can be. It did turn out to be affecting my external carotid arteries, like the paper says (along with internal iliacs). Luckily, after being on baby aspirin & controlling my blood pressure naturally, I don't hear it anymore. I was also lucky to be diagnosed before having an aneurysm, dissection, or clot; since most women are diagnosed after a vascular event.

BackgroundFibromuscular dysplasia (FMD) is a nonatherosclerotic arterial disease that has a variable presentation including pulsatile tinnitus (PT). The frequency and characteristics of PT in FMD a...

11/18/2025

Does your adrenaline crash all day then explode at night this hidden EDS cycle hits harder than people realize and might explain your nonstop sleep struggles 🦓

11/16/2025

My diagnosis of non-epileptic seizures is a type of FND.

Functional Neurological Disorder (FND)

11/14/2025

https://www.ehlers-danlos.com/the-future-of-eds-and-hsd/

The Road to 2026 is a global collaboration led by the International Consortium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD). The project focuses on updating the 2017 International Classification and diagnostic criteria to advance global understanding, diagnosis, an...

11/13/2025

11/11/2025

This has definitely gotten to me this year - worse than ever! My favorite season of the year, and I've felt like 💩😭

11/01/2025

Has anyone else been diagnosed with Fibromuscular Dysplasia?

FMD was the second rare disease I was diagnosed with. It currently affects my carotid & iliac arteries. How did I get diagnosed without having a stroke, dissection or aneurysm first (like most women)? I heard my heartbeat whooshing in my ear (pulsatile tinnitus), and I took it seriously.

I suspected FMD & EDS were related when I got the diagnosis (bc our vasculature IS connective tissue). That was confirmed by research papers, and again by my new vascular doctor and my geneticist.

And according to Dr. Claude Hamonet, a leading professional in all things EDS, ALL subtypes of Ehlers Danlos can affect vasculature to some degree, not just vEDS.

What's your story?

10/31/2025

Interesting article! Especially since my doctors suspect I have IIH, but the test showed no papilledema. I was deemed too high risk for lumbar puncture, so the only alternative they had was brain surgery to look around (no thanks😳). Reading about other EDS patient experiences, I don't believe IIH is rare in EDS, it seems like a fairly common comorbidity.

From the article:

No swelling of optic nerve, a hallmark feature, seen in patients
The scientists noted a surprising absence of papilledema, or swelling of the optic nerve, that’s a hallmark feature of IIH.

The team believes this may be because EDS makes the tissues surrounding the brain and spinal cord, known as the meninges, more flexible. This extra elasticity could allow the tissues to stretch and accommodate more CSF without immediately damaging the optic nerves, they noted.

These findings suggest that “IIH may be considered one of the rare manifestations of EDS,” the researchers wrote. The team noted that, while covering just three patients, “this is the largest series of cases linking IIH to EDS.”

A new study suggests a possible link between Ehlers-Danlos syndrome and high pressure in the skull, seen in three U.S. women with EDS. https://buff.ly/fIryGTD

10/31/2025

10/28/2025

Neck brace ✔️
Knee brace✔️
Back brace✔️
Ice pack in back brace for pain✔️
Compression socks✔️
Only dresses bc of mast cell pressure rashes✔️
Natural fabrics✔️
Flat sole, specific shoes that may be ugly, but keep plantar fasciitis & joint pain at bay✔️
Layers for poor temperature control✔️
Water bottle with electrolytes & cromolyn ✔️
Rescue rxs on hand for POTS episode or seizure✔️
Medical alert bracelet ✔️
Rollator in car, just in case✔️
Ride the motorized cart, if available ✔️
Hope for a handicap spot at 44 years old ✔️
Always have a list, bad memory✔️
Allow for extra time/don't be in a hurry✔️
Prep with pain meds✔️
Ask for help unloading ✔️
Lay down/rest afterwards ✔️
Try not to feel guilty✔️

All this for a simple grocery shopping trip. ✅
Frustrating ✅
Thankful for an understanding family✅
Bringing awareness to daily struggles for chronic illness sufferers☑️