The Connective Issue/Ehlers Danlos Myrtle Beach

03/16/2026

Feeling like 💩? Me too. In the last 48 hours, the barometric pressure has dropped 50 points. In the next three hours, it will rise 40 points. These are huge shifts for people with connective tissue disorders, autonomic dysfunction, and other chronic illnesses, who tend to be very sensitive to pressure changes.

Here’s what that kind of drop can feel like physiologically:

🌧️ Nervous System & Autonomic Effects-
Because Postural Orthostatic Tachycardia Syndrome affects autonomic regulation, pressure changes can destabilize the nervous system.
You might notice:
•Sudden fatigue or “crash” feeling
•Dizziness or presyncope
•Heart rate fluctuations
•Feeling wired but exhausted
•Increased temperature regulation problems
•Adrenaline surges or shakiness
•Many people with POTS say storms feel like their body is “short-circuiting.”

🦴 Joint & Connective Tissue Pain-
With Hypermobile Ehlers-Danlos syndrome, connective tissue already has altered collagen structure.
Pressure drops can cause:
•Joint aching or deep bone pain
•Increased joint instability
•Neck or spine pain
•Muscle spasms
•Feeling like joints are looser or harder to control
•Some people describe it as “everything feeling inflamed or heavy.”

🧠 Neurological Symptoms-
Changes in atmospheric pressure can affect intracranial pressure and blood flow, which may aggravate:
•Headaches or migraines
•Brain fog
•Vision changes
•Ear pressure or ringing
•Balance issues
•If you have structural issues in the neck or venous drainage variations, pressure swings can make this more noticeable.

🔥 Mast Cell Activation-
For people with Mast Cell Activation Syndrome, storms and pressure shifts can act as environmental triggers.
Possible symptoms:
•Flushing
•Itching
•GI upset
•Increased inflammation
•Sinus congestion
•Feeling “flu-like”

⚡ Seizure-like / Convulsive Episodes-
Large pressure changes can increase nervous system overload, which may trigger:
•tremors
•shaking episodes
•dissociation
•functional seizure activity
•Storm fronts can essentially push the nervous system past its stimulus threshold.

🫀 Circulation & Vascular Symptoms-
With various vasculature affectations in connective tissue disorders, pressure changes may contribute to:
•Blood vessel dilation
•Head pressure
•Pulsatile sensations
•Worsening orthostatic intolerance

🌩️ Many people describe storms like this as:
•Feeling hungover
•Feeling like they’re coming down with the flu
•Sudden body-wide inflammation
•Extreme fatigue + pain spike
•Nervous system feeling “overloaded”

💡 Something interesting: Studies show people with connective tissue disorders and migraines often react when barometric pressure changes as little as 0.15–0.20 inHg, so 0.50 is a pretty BIG swing!

✅ Things that sometimes help during pressure drops-
•Extra electrolytes
•Compression garments
•Staying well hydrated
•Reducing sensory input (resting nervous system)
•Gentle heat for joints
•Stabilizing neck if that’s a trigger

I am so thankful that the storm has been much less severe than anticipated (so far), but I'll be really glad when the barometric pressure evens back out. I'm having a lot of head pressure/migraine, neck and every other joint pain/swelling, extreme fatigue/heaviness.

What symptoms are you having, and what's helping you get through?

03/13/2026

Living with chronic illness has changed the way my body handles stress in ways that are hard to explain unless you’ve lived it.
Over the years, the threshold of what my nervous system can tolerate has gotten lower and lower. With conditions like Ehlers-Danlos Syndrome (EDS), fibromuscular dysplasia (FMD), mast cell activation syndrome (MCAS), POTS, and several related comorbidities, stress isn’t just emotional—it’s biological.

For me, stress can mean a lot of things: loud environments, too much activity, lack of sleep, illness, travel, emotional strain, or even just pushing my body too hard on a “good” day. When my system gets overloaded, it can trigger very real physical reactions—flares of pain, tachycardia, inflammation, mast cell reactions, severe fatigue, and even convulsive non-epileptic seizure episodes.
Because of this, I’ve had to make difficult choices. I miss gatherings. I stay home more than I want to. I say no to things that once would have been easy yeses. Not because I don’t care or don’t want to be there—but because protecting my peace is sometimes the only way to protect my physical body, and in some cases, even my life.

I know from the outside it can look dramatic or like I’m “just stressed.” But the effects show up in scans, lab results, heart rate monitors, and medical records. This isn’t about personality or attitude—it’s biology. It’s medicine. It’s the reality of living with complex chronic illness.
What many people don’t see is how much work it takes just to keep functioning.

My life involves constant symptom management:
• Physical therapy multiple times a week
• Frequent doctor’s appointments (many that are hours away)
• Keeping up with new research and treatments
• Advocating and educating others about these conditions
• Strict medications and restrictive diet
• Baths with salts and oils; topicals, ice and heat; bracing and mobility aids
• Managing reactions, pain, and fatigue throughout the day
• Trying everything possible to improve sleep—because when sleep fails, symptoms spiral

It’s a full-time balancing act.
And that’s happening while I’m also navigating menopause, homeschooling two teenagers, being intentional about my marriage, and working hard to protect my mental health so I don’t completely burn out.
This life comes with sacrifices. Missed opportunities. Guilt. Frustration. Grief for the things I can’t do anymore. Sometimes even lost relationships.
But please know this: I’m not giving up. I’m not being antisocial. I’m not a grumpy homebody.

I’m fighting—every single day—for answers, treatments, stability, and the best quality of life I can build within the limits my body gives me.
Sometimes the bravest and most necessary thing I can do is rest, protect my nervous system, and choose peace.
And if you’re someone who has shown patience, understanding, and compassion toward me along the way—thank you. It means more than you probably realize.

03/11/2026

03/07/2026

Such a problem for me!! What has helped you?

03/07/2026

Happening now!! Recordings available later with ticket, if you can't make it today. Great topics on the agenda!

Female Health Summit - The Ehlers Danlos Society

Join The Ehlers-Danlos Society for the Female Health Summit, a virtual event happening on March 7, 2026. Tailored for individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), as well as the healthcare providers and caregivers who support their care, this summit brin...

03/06/2026

The EDS Pain Debate: Is it Mechanical Damage or Central Sensitization? 🧬

“You’re hypermobile, but your scans are normal.”

If you live with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), you have probably heard something like this from a doctor.

This is where the debate usually starts.

Some doctors say your pain is mechanical.
Loose ligaments. Joint instability. Subluxations. Muscles working overtime just to hold your skeleton together.

Others say the pain is centralized.
Your nervous system is overreacting. The brain is amplifying pain signals. Sometimes patients even get told it is “just anxiety.”

But newer research suggests something important:

This is a false choice.

EDS pain is not one or the other.
It is a biological feedback loop.

Here is what many researchers now believe is happening.

1. The Mechanical Reality: Constant Micro-Trauma

EDS pain is not only about dramatic joint dislocations.

Because connective tissue is fragile, the body experiences tiny injuries during normal daily movement.

Ligaments overstretch.
Fascia strains.
Muscles stay in constant spasm trying to stabilize unstable joints.

Even basic activities like walking, typing, or holding posture can send continuous damage signals to the spinal cord.

Over time, that constant input matters.

2. The Nervous System Adapts: Central Sensitization

When the nervous system receives pain signals for months or years, it can become hyper-sensitive.

This process is called central sensitization.

The brain essentially turns the pain volume dial way up.

That is why many people with EDS experience:

• widespread pain
• hyperalgesia (increased pain sensitivity)
• allodynia (pain from things that normally should not hurt, like clothing or light touch)

So the pain is not imagined.
The nervous system has literally rewired itself to amplify signals.

🚨 The Clinical Problem

Sometimes doctors label EDS pain purely as nociplastic pain. That means pain without ongoing tissue damage.

The danger is that this assumption can cause real structural problems to be missed, including issues like craniocervical instability or severe joint instability.

Both the mechanical body and the nervous system matter.

3. The Possible Third Factor: Hidden Inflammation

For a long time, EDS was thought to be non-inflammatory because common blood markers often look normal.

But newer research is exploring something deeper.

Studies looking at extracellular matrix proteins and immune signaling suggest there may be ongoing connective tissue breakdown and localized inflammation in some patients.

Researchers are also investigating the role of mast cell activity and neurogenic inflammation in hypermobility disorders.

This area is still evolving, but it may help explain why symptoms often involve pain, immune reactions, and nervous system dysregulation at the same time.

The Takeaway

EDS pain is complex.

It likely involves a combination of:

• mechanical instability
• nervous system sensitization
• possible immune or inflammatory factors

Your pain is not imaginary, and it is not simply “in your head.”

The body, nervous system, and connective tissue are all interacting in ways medicine is still trying to fully understand.

👇 If you have EDS or HSD, what has been your experience?

Do doctors focus more on your joints and instability, or do they focus more on your nervous system and anxiety?

Your stories matter. Share them in the comments.

📚 Research references include publications in:

• American Journal of Medical Genetics
• ImmunoHorizons
• International Association for the Study of Pain (IASP)
• The Ehlers-Danlos Society – Road to 2026 Initiative

02/28/2026

Had a good 2 days! Some good homeschooling & hanging out with my kids. Mama-daughter time with dinner & movie, and a new store she wanted to check out. (Rough night with pain from activity & weather change + g.i. issues from dinner). Today I cut & colored her hair, ran some errands, did a few chores.
Now I'm in bed with a heating pad on my pelvis, ice pack on my back, meds taken; after trying salt & oils bath. Interstitial cystitis is so excruciating.
Knife in the bladder and lower back at the same time, so bad it causes nausea... unrelenting pain. 😖
Was it something I ate? Activity? Barometric pressure changes? Just a Friday?
Thankful for a decent two days. Praying this eases off soon.

Does EDS/MCAS affect your bladder?
What helps?

02/26/2026

Loving Someone in a Failing Body: How Ehlers-Danlos Syndrome Changes Romantic Love — and How Love Can Still Win -

No one walks into a relationship expecting their body to become the third person in it.
When you fall in love, you imagine road trips, late nights laughing, growing older together, and building a life side by side.
You don’t imagine medical binders stacked on kitchen tables.
You don’t imagine canceling plans because joints slipped out of place.
You don’t imagine apologizing for needing help getting dressed.
But Ehlers-Danlos Syndrome has a way of rewriting expectations.
And over time, it doesn’t just change the person diagnosed.
It changes the relationship.

- The Grief No One Warns You About -
Chronic illness carries a quiet grief.
It’s not always dramatic.
Sometimes it looks like watching your partner carry groceries while you pretend you aren’t calculating how many steps it will take to make it back inside.
Sometimes it’s seeing disappointment flash across their face when plans change again.
Sometimes it’s hearing yourself say:
“I’m sorry.”
for the hundredth time that week.
People with EDS often grieve the version of themselves they thought their partner deserved.
The energetic one.
The spontaneous one.
The one who didn’t need help standing up after sitting too long.
Meanwhile, partners grieve too.
They may never say it out loud.
But they grieve canceled adventures.
They grieve watching someone they love hurt without being able to fix it.
They grieve feeling helpless.
Love becomes heavy with things neither person caused.

- When Your Partner Slowly Becomes Your Caregiver -
EDS rarely arrives all at once.
It creeps in.
A little more fatigue.
Another appointment.
Another medication.
Another flare.
Until one day you realize the person who once held your hand during dates is now helping you off the couch.
Caregiving born from love can feel beautiful.
And heartbreaking.
The person with EDS may feel like a burden.
The partner may feel guilty for feeling tired.
Both people may silently wonder:
“Is this fair to them?”
But fairness was never the promise of love.
Presence was.
The Loneliness Inside the Same Room
One of the hardest parts of chronic illness is invisibility.
Pain doesn’t always show on the outside.
Fatigue doesn’t have a cast or stitches.
A partner may see someone scrolling their phone and think they’re resting.
What they don’t see is the nervous system crash happening underneath.
Misunderstandings grow quietly.
“I thought you were okay yesterday.”
“I don’t understand why today is different.”
EDS teaches couples a hard lesson:
Symptoms are not linear.
And neither is patience.

- Intimacy Changes — But It Doesn’t Have to Disappear -
No one talks enough about how chronic pain affects intimacy.
Fear of injury.
Exhaustion.
Medication side effects.
Joint instability.
Sometimes affection itself becomes painful.
The silence around this can feel devastating.
But intimacy is not only physical.
Sometimes it becomes:
Hands intertwined during an appointment.
A forehead kiss when pain medication finally works.
Falling asleep together during a flare because exhaustion wins.
When couples allow intimacy to evolve instead of disappear, connection often deepens.
Because vulnerability is its own form of closeness.

- The Financial and Emotional Weight -
EDS doesn’t just hurt bodies.
It impacts careers.
Dreams.
Security.
Disability applications.
Insurance denials.
Medical bills that arrive faster than hope sometimes does.
Roles shift.
One partner may carry more financial responsibility.
The other may carry guilt heavy enough to feel suffocating.
But illness is not laziness.
And needing help is not failure.
Learning to fight systems together instead of each other changes everything.

- How Love Survives -
Love survives EDS when couples stop asking:
“How do we go back to normal?”
and start asking:
“What does our new normal look like?”
Healthy relationships with chronic illness aren’t built on pretending things are fine.
They are built on radical honesty.
Talk Before Silence Turns Into Distance
Say the hard things.
“I’m scared you’ll resent me someday.”
“I feel overwhelmed sometimes.”
“I don’t want you to lose yourself taking care of me.”
Honesty prevents resentment from growing in the spaces where assumptions live.

- Protect Joy Like It’s Medicine -
Illness will try to take center stage.
Don’t let it.
Watch movies together.
Laugh at ridiculous memes.
Sit outside and drink coffee even if it’s only ten minutes.
Joy is not frivolous.
It is survival.
Let Your Partner Be Human Too
Caregiving partners need breaks.
They need hobbies.
They need laughter outside illness.
Supporting someone with EDS is emotionally heavy work.
Love grows when both people are allowed to breathe.

- Stop Measuring Love by Productivity -
You may not be able to contribute the same way you once did.
But presence matters.
Encouragement matters.
Emotional support matters.
Love is not a ledger balancing effort.
It is a choice repeated

~Carley T. Marie

02/24/2026

MUSC EDS Clinic update:
New patient visit with Julie Zgambo!

Sharing some info for anyone who needs it:
-DM Orthotics for double shoulder brace
-YouTube videos by Dr John Mitakides to help with migraines/TMJ pain
-For POTS: 2-3 grams of salt + 2-3 liters of water per day. Can use 3 teaspoons of table salt throughout the day (for cheap option), or salt tabs (Vitassium brand recommended).

Doctors:
•Neck/CCi/Chiari/IIH-
Bolognese, Klinge, Jenkins (all in the northeast)
•Cardio- Judge or Wharton (MUSC)
•Vascular - Veeraswamy (MUSC)
•Shoulders - Eichenger (MUSC)
•Hips - Pullen (MUSC)
•Endocrin. - Mathews (Summerville)

SO thankful for Julie taking 2 hours with me!

02/23/2026

EDS Clinic first official "subscription" member visit day! Excited & thankful to start this new journey. I have a whole packet of spreadsheets with my history, family history, meds, allergies, etc... I added "current problems" & MCAS Triggers this time, to be as prepared as possible, and get the appropriate specialist referrals based on most urgent needs.
I will keep updating on my clinic visits, so others can decide if they want to join☺️
What do you do to prepare for your visits?

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