The Connective Issue

02/21/2026

Started with right knee as a teen, now it's also left hip, both shoulders, both sacroiliac joints, and neck. 😵‍💫🦓
Which joints sublux on you?

02/21/2026

02/19/2026

02/18/2026

What is my biggest issue right now?
Head & neck pain😥

My cervical scans show:

1️⃣ “Straightening and reversal of normal cervical lordosis”
Your neck is supposed to have a gentle backward “C” curve.
Mine is straightened & slightly reversed

Causes:
• Muscle spasm
• Chronic guarding
• Instability
• Degenerative changes

🤕Symptoms:
Chronic neck tightness
Headaches (especially base of skull)
Muscle fatigue
Feeling like your head is heavy
Occipital neuralgia-type pain

2️⃣ Anterolisthesis:
When I bend forward, my vertebra slides forward. When extend backward, it moves back into place.
That is dynamic instability.

Cause: lax connective tissue from EDS

🤕Symptoms:
Neck pain with movement
Clicking or shifting sensation
Headaches
Dizziness
Flare with looking down (reading, phone use)
Muscle spasms

3️⃣ Degenerative Disc Disease
This means the cushions between the bones are:
Drying out (disc desiccation)
Losing height
Developing bone spurs (osteophytes)

🤕Symptoms:
Deep aching neck pain
Pain radiating into shoulders
Stiffness
Grinding sensation
Flares with activity

4️⃣ Facet Arthropathy & Uncovertebral arthritis & degeneration
(These are small joints in the back and sides of your neck that help guide movement)

🤕Symptoms:
Pain with extension (looking up)
Pain turning head
Localized neck pain
Referred pain into upper back

5️⃣ Spinal Canal Narrowing (Central Stenosis)
This means the space where the spinal cord sits is smaller than ideal.

🤕Symptoms:
Arm heaviness
Hand clumsiness
Balance issues
Electric shock sensations
Weakness
Increased reflexes

6️⃣ Foraminal Narrowing (where nerves exit): This means the holes where nerves exit are narrowed

🤕Symptoms:
Pain, numbness, weakness, tingling, burning in arms, hands, fingers; weak grip, loss of dexterity
----------------------
My brain scans show:

1️⃣Crowding of foramen magnum due to slightly ectopic, pointed cerebellar tonsils, flattening of the pituitary with partially empty sella:
❓❓❓
The foramen magnum is the opening at the base of your skull where your brain connects to your spinal cord.
The cerebellar tonsils are small parts at the bottom of your brain.
In my scan:
They sit lower than average.
They look pointed.
There’s crowding in that area.

The pituitary gland sits in a little pocket in the skull called the “sella.”
When pressure inside the skull is high, that pocket can look partially empty because the gland gets flattened.

WHAT DOES ALL THIS MEAN?
I have a Chiari malformation (the bottom of my brainstem is being squished) and idiopathic intracranial hypertension (too much pressure inside my skull).

🤕 Symptoms:
Daily pressure headaches
Vision changes (blurred vision, double vision, temporary vision blackouts)
Pulsatile tinnitus (whooshing sound)
Neck pressure
Nausea
Light sensitivity
Back of head/upper neck pain
Headaches worse with coughing, straining, laughing
Dizziness
Balance problems
Arm tingling or weakness
Swallowing issues
Pressure at base of skull

2️⃣Asymmetric small size of right transverse and sigmoid dural venous sinus
❓❓❓
You have large veins inside your skull that drain blood out of your brain (like plumbing pipes). My system is uneven.

🤕Symptoms:
Head pressure
Headaches
Pulsatile tinnitus (whooshing in ears)
Visual disturbances
------------------

If you made it this far, thanks for reading! Hopefully it sheds a little light on why I'm home a lot now, and it's hard to make/keep plans. And this is only ONE part - Every single bodily system I have is affected. There is literally always something going on. Lately, lots of migraines & neck pain. I push through as much as I can to keep living and getting out, but some days are just hard.

02/16/2026

Who else is attending the EDS Society Female Health Summit? I am so thankful for being awarded a scholarship to cover my ticket. I'll be attending virtually. While the window for that scholarship is closed, there is still time to apply for the EDS Global Learning Conference in July! The last virtual conference I attended was amazing! So many knowledgeable professionals in one place, sharing invaluable information! I highly recommend 😁

Here is the link to apply for the July scholarship:

https://www.ehlers-danlos.com/2026-global-learning-conference/scholarships/?

Info/tickets/itinerary for the Female Health Summit on March 7th:

https://www.ehlers-danlos.com/female-health-summit/

02/16/2026

I tried it! The Squishpillow!
I've been needing a new pillow, and have tried several different ones the past few years. My EDS specialist PT told me to try a goose down pillow, and that was going to be my next attempt. But I've had this over a week now, and so far, I really like it! Most pillows are too big/firm (including those special shaped cervical pillows) and my neck can't handle it. I've tried the buckwheat pillow and it's too hard for me. I got the "soft" at Target. They only had standard size where I went, but did have king pillow cases in the special fabric. It comes with a case that feels like squishmallow fabric, soooo soft!
The only adjustment I've had to make is figuring out what to do with my arms/shoulders bc my old setup was two different pillows. The "soft" seems to be great for my neck, whether I'm on my side or back...squishy but supportive. So far I'm happy!

02/15/2026

If you're in the Myrtle Beach area, go see Samantha at Native Alchemist & Massage! She has been studying massage for connective tissue problems, and even has a few EDS clients already. She also does pre-natal and other types as well. She has a fully adjustable massage bed, for those of us with mobility issues or trouble getting comfortable, and she adds nice bonuses during your time for no extra charge. She has never hurt me, and that's saying something! She also happens to be one of the sweetest humans I know.




https://www.facebook.com/share/19hKPHrfX4/

02/14/2026

Lunch & a musical at the local university with my son for Valentine's. Straight home to bed with back & neck pain, migraine, heartburn and nausea. 🙄

I'm thankful that my big baby boy still wants to hang out with his Mama💙🙏🏻

02/13/2026

Every time. Soooo much planning for every little thing🤦🏻‍♀️

02/13/2026

This is me. We are in the physical therapy and bracing stage. I spoke with my doctor about different kinds of injections, and based on my own research and speaking with others who've had them, and his patients' outcomes, we both agreed they aren't worth the risks/costs. We also agreed on no surgery for now. The "seizures" I was having (that were dismissed by one specialist, untreated/mistreated/undiagnosed by multiple hospitals, and misdiagnosed by another specialist) were likely convulsions brought on by either severe dysautonomia, or nerve/blood vessel/brain stem compression, or a cascade/combo of both. Thankfully, I'm in my longest stretch of not having them since they started almost three years ago. Not sure if it's getting my POTS under control (bc it was finally diagnosed and treated), or if it's the support/PT of the cervical spine, or having meds/therapies to treat the first signs of it coming on...maybe a combo of it all...but I am so thankful they've stopped. Having full body convulsions/contortions that grew to last two hours, not being able to speak, heart rate/BP all over the place, even bloodwork they got during them was way off....it was very scary and extremely painful. There were a few times I honestly thought I may die.
It all started with having small episodes of heart racing & short of breath. Then I got tingling in my extremities. Then I started getting small tremors, in my hand and arm at first. Then my jaw locked up and my sp*ech slurred. It just kept slowly getting worse, until it looked like something out of the exorcist. I was dismissed, gaslit, sent home with anxiety meds, held under stroke protocols, and finally diagnosed with psychogenic non-epileptic seizures (a type of "functional neurological disorder"), and sent home with some websites and told to go to therapy. I was already doing cognitive behavioral therapy. (Finished two years of that in Jan!👏🏻)
I have come to believe that most FND diagnoses are "trash-can diagnoses"...for when they can't nail down the real cause. Turns out, these convulsions (or some form of them) are somewhat common in EDS patients, but like everything else about us, very hard to find a doctor to correctly diagnose. If you're still looking for answers, don't give up! Keep trying new doctors! Search in group chats for symptoms and others going through it. Reach out to doctors that are suggested in EDS groups. I've sent emails all over the country!
Get pics, videos, keep records of everything! There is hope for better days. "No cure" does not mean "No better quality of life." Fight like a 🦓!!

02/12/2026

I have joined free, voluntary gene studies at MUSC. I want to help in any way I can, to broaden the knowledge base of people with this condition. I am also a full body donor to medical science - if anyone has questions about this process, feel free to ask!
I got my first results back from the Helix study, and I think it’s so interesting what they can find in our DNA!

I do NOT have the most common genes that put me at risk for breast, ovarian, endometrial or colon cancers; or genetic high cholesterol. Yay!
(they don’t/can’t test for every associated gene, and this doesn’t mean that I cannot get these things, it just means I’m not as genetically susceptible as other people).

The insights are so neat! For instance, they can see that I metabolize caffeine quickly, which is why I’ve never gotten the “caffeine buzz”…I can drink coffee and go to bed lol. Or that I’m likely to be a night owl, and asparagus doesn’t give me stinky p*e; how I sleep, eye color, hair type, how I sunburn, that I’m not good in high altitudes, and can process lactose, etc…. So cool!!

I love the ancestry part too! (Not the kind that tells me I may have a cousin in North Dakota, it doesn’t match me to other people, just where my ancestors came from). Mostly European, no surprise there. But I’m bragging to my kids that I’m almost 1% Moana🌺🤣😂

Just thought I’d share my nerdy excitement, in case anyone was interested in what you’ll get back from Helix.