The Connective Issue/Ehlers Danlos Myrtle Beach

04/07/2026

Very thankful for my electric wheelchair & other mobility aids, for living at the beach, and for beautiful weather.

04/03/2026

The Norris Lab at MUSC is asking for participants in a research study about EDS. It requires bio-samples (like blood, saliva, etc). I have a virtual visit scheduled next week to start the process. They also have a clinical trial for vagus nerve stimulation in EDS/dysautonomia patients (I am not a candidate bc I have a spinal cord stimulator, but otherwise I'd try it!). Just sharing in case anyone is interested!

EDS Research | The Norris Lab https://share.google/6HxdcZvkfBpGMswZ6

04/02/2026

✝️Lord, help me to find joy in my blessings today. Help me to let go of the guilt over what my body does not allow me to do.
Take away my frustrations over my limitations. I give you my fear and worry over my future and what that will look like in this broken body. I trust that there IS a purpose in suffering, and that one day I will know what that is. Help me to show your love, to the people I love, in the midst of chronic pain. Thank you for all that you continue to bless me with. Thank you for my salvation; for the knowing that one day I will have a new body, and I'll dance with you in it - and be pain free. AMEN🙏🏻

04/01/2026

*Seems like there is enough interest!
How about a Saturday at the Surfside Beach library, around 11:00/noon? (We'd have to be out by 1:45) I can book a date of this works for the majority

Would anyone be interested in a local meetup? We had a few a long time ago, but our host moved away. We could meet fellow EDS warriors, share info, commiserate...
Somewhere in the Myrtle Beach area. If anyone has ideas for a place, or would like to host, let us know!

03/31/2026

EDS Knowledgeable Specialists!
This has been my #1 issue for the past several years, and my #1 priority when joining the MUSC EDS Clinic.
We're all tired of being passed around to doctors who are still clueless, right?!
This is a list of names I've been given/referrals for appointments I personally have, that have come from the EDS Clinic. It's a priceless piece of information - IYKYK. Let's keep it updated! Feel free to add names in the comment section, and I'll add it to the graphic so it's easily saved when you need to access it😁

03/31/2026

Steroid Injections - Good or Bad?
💉💉💉💉💉
Injections (like corticosteroids) can be incredibly helpful for short-term pain relief and inflammation. Many of us have been offered them—sometimes repeatedly—as a solution for joint pain, tendon issues, or nerve irritation.
But what often isn’t discussed enough is the long-term impact.

I've had them for almost 3 decades, in various joints in my body. Short-term... they've worked well, for the most part (a few episodes of "cortisone flare" were pretty nasty). Long-term...I've decided in the last two years to stop them because I've learned they can be harmful when used for years, especially in people with already fragile connective tissue.

Consider this:

🧬 Tissue Breakdown Over Time

Steroids don’t just reduce inflammation—they can also weaken collagen structures. With repeated use, this may contribute to:
• Tendon degeneration or rupture
• Ligament laxity (more instability, not less)
• Cartilage breakdown in joints

⚠️ Temporary Relief, Long-Term Cost

Pain relief can mask underlying instability. When the joint “feels better,” it’s easy to unknowingly overuse already fragile structures, leading to worsening damage.

🦴 Joint Degeneration Risk

Frequent injections into the same joint have been linked to accelerated wear and tear, especially in weight-bearing joints like hips, knees, and spine.

🧠 Nervous System & Systemic Effects

Steroids can also affect:
• Blood sugar regulation
• Immune response
• Hormonal balance
• Mood and sleep

For people with complex conditions (like MCAS, dysautonomia, or chronic illness), these effects can be amplified.

💡 Important Takeaway

Steroid injections are not “bad”—but they are not neutral either. They’re a tool, and like any tool, they come with trade-offs.
*********
If you have connective tissue fragility, it’s worth asking:

• Is this addressing the root cause—or just symptoms?
• What are the long-term implications for my joints/tissues?
• Are there stabilizing or regenerative options to explore alongside or instead?

You deserve informed consent—not just quick fixes.

Have you had steroid injections? What was your experience?

03/28/2026

🧬Have you seen abnormal lab results over and over? Have your doctors ignored them, said everything looks normal, or not addressed it all (and you find it later in your chart)?
While some numbers may not be concerning in the moment, repeated patterns over years can point to chronic issues. When you see multiple doctors in that time, there may not be ONE who puts the big picture together.

If you suspect there is a pattern or a problem, take screenshots and show them to your doctor.
**************
Here's my own example:
The pictures of lab results are over a period of three years. While the single result at the time wasn't concerning to my doctor(s), this pattern shows:

1. Chronic inflammatory / stress response, strongly suggesting that my body has been in a persistent “fight mode” for a long time, that can happen with:
•Chronic inflammation
•Ongoing infection (even low-grade)
•Autoimmune activity
•Physical stress (like dysautonomia flares, trauma to the body, etc.)
•Given my diagnoses of EDS/POTS/MCAS, this makes sense now

2. Possible mast cell / immune dysregulation that can be seen in:
•Chronic immune activation
•Viral reactivation (like EBV, HSV, etc.)
•Mast Cell Activation Syndrome (ME!)

3. Blood thickness / dehydration pattern that often points to:
•Low blood volume / dehydration
(Very common in POTS/EDS)

4. Metabolic stress / mild acidosis pattern that suggests the body is sometimes running in a stress metabolism state, probably from POTS (common in flares)

5. Electrolyte instability that can worsen:
•Heart symptoms
•Weakness
•Nervous system instability

6. Mild liver + kidney strain signals that suggest:
•Chronic stress on the body
•Possibly contributing to dehydration & inflammation

🧬🧪🧬🧪🧬🧪🧬🧪
Putting It All Together
🧪🧬🧪🧬🧪🧬🧪🧬

This pattern is most consistent with a chronic dysautonomia + inflammatory state, likely involving: POTS, EDS, MCAS

⭐Why I (likely) Feel So Bad
These labs show symptoms like:
•Fatigue
•Adrenaline surges
•Air hunger / breathlessness
•Tachycardia
•Brain fog
•Feeling “wired but exhausted”

Because my body is basically stuck between inflammation + low blood volume + nervous system overdrive
🧪🧬🧪🧬🧪🧬🧪

Did I find that ONE doctor who finally put it all together?
-NO

Did I always question the abnormal results at the time?
-YES, and was not given reasons why

Did I start noticing a pattern, and doing my own research into what could be causing this?
-YES

Then I took that info and purposefully searched down specialists for what I thought was wrong, and ended up being correct in my own diagnoses. There is more to that journey, but this small part is important. I have spent most of my adult life researching, learning, schooling, and advocating for myself within a system that is not built for complex chronic illness. I finally have answers. I finally have some doctors who know about these things. But it took YEARS of my own effort to get here.
⭐Advocate for yourself. Check your charts!
📖Don't be afraid to learn new things! I know the medical world can be intimidating, but no one will ever be as invested in your quality of life as YOU!
💪🏻Don't give up! Fight like a zebra!🦓

03/27/2026

When your nervous system hits overload:
(EDS/POTS/MCAS reality)

Today was a good example of how quickly the autonomic nervous system can spiral when it’s already under stress.

I’ve been under a lot of stress lately, and during PT today I had infrared dry needling done. While I was sitting still with the needles in (on a portable massage chair), my heart rate started climbing—eventually hitting the high 130s despite being fully at rest.

I tried my usual tools:
• Breathing exercises
• Electrolytes
• Staying calm

But my body didn’t respond.

What it felt like:
• Jittery, internal “adrenaline surge” feeling
• Shortness of breath
• Heart racing out of proportion to activity

Once the needles were removed, I had some light massage, and my heart rate lowered to the 110s. But upon standing, it got worse again:

•Dizziness
• Tremors in arms, hands and head
• Speech changes (slurred, word-finding difficulty)
• “Drunk”/disconnected feeling

The amazing staff at my PT office laid me flat with ice packs on my head & chest to try to reset my autonomic nervous system. Things slowly started to calm down while I waited for my son to come get me. I made my weak, wobbly way home and into bed.

I ended up needing:
• Horizontal positioning
• Salt + fluids
• Nervous system calming (Va**um + hydroxyzine)
• Time

After about an hour, things began to settle. Now (4 hours later), I’m exhausted & weak, but improving.

What likely happened:

This was most likely a combination of:
• Baseline stress already elevating my sympathetic nervous system
• A physical trigger (dry needling) adding more sensory input
• My autonomic nervous system (ANS) becoming dysregulated

In conditions like EDS with dysautonomia, the body can:
•Overreact to stimuli
•Struggle to regulate heart rate and blood pressure
•Flip into a prolonged “fight or flight” state

Once that threshold is crossed, it’s not just anxiety—it’s a full-body neurological cascade.

Sometimes it’s not one big trigger—it’s the stacking of stress + stimulation + underlying dysautonomia that pushes the system past its limit.

Recovery isn’t instant. It’s about supporting the nervous system until it finds its way back to baseline.

If you experience episodes like this, you’re not alone—and you’re not “just anxious.” This is real, physiological dysregulation.

I am so thankful for my sweet friends at Comprehensive Rehab and Physical Therapy, for always being helpful and kind🙏🏻
This is the first time I've had this reaction during needling, but I've had the episodes before. They have gotten to the point that I had full body convulsions for two hours (like an Exorcist scene), have been hospitalized multiple times, and eventually diagnosed with FND/ non-epileptic seizures after video EEG by a non-EDS neuro doc. It's been hard for my new EDS docs to determine if these are severe POTS episodes/dysautonomia, or if it's a physical/neurological issue from cranio cervical instability and/or Chiari. Either way, I'm thankful that today wasn't as bad as in the past🙏🏻

Please share your experiences and what has helped!

03/19/2026

03/18/2026

POTS attack. Haven't had a bad one in awhile. Felt a little "potsy" all day. Pushed through bc it's a busy day. Even hit the oxygen bottle on the way out the door to softball practice. Got worse on the way here. I brought blankets, prepared for the cold to watch her play. But now I'm bundled up, laying down in the car, just to catch my breath and calm my system. Can't see her from the car, so one more thing I'm missing bc of this crap😡 I know it's just practice, but I'm at every one, because the years are short, and I don't wanna miss it... But if I stayed vertical much longer, I may have passed out.
I'm thankful to still be on this side of the dirt, thankful for my blessings, and I know it could always be worse. But dang, this sucks.

03/18/2026

I'll ask my doc at next visit, but does anyone have experience with his suggestions near the end?

https://www.facebook.com/share/v/1CHB1YerBy/

03/17/2026

You know the impression left on your skin from sleeping on a bed sheet wrinkle? Ever have that turn into an itchy rash?
Same for bras, underwear, waistbands or other tight fitting clothing...

🧬In connective tissue disorders or mast cell disorders, your skin’s mast cells are extra sensitive and reactive, so even very minor physical pressure—like a wrinkle in a bedsheet—can trigger them to release histamine and other chemicals.

That leads to:
•Redness or rash exactly where the pressure was
•Raised lines or welts
•Itching, burning, or stinging

This falls under a type of physical urticaria (hives) called:
👉 Dermatographia
and/or
👉 Delayed Pressure Urticaria

With MCAS, your threshold is lower, so things that wouldn’t affect most people do affect you.

😬Even a small bed sheet wrinkle can:
•Create a tiny ridge of pressure against your skin
•Reduce blood flow briefly in that spot
•Add friction + pressure together (a big trigger combo)

🦠In MCAS, that’s enough to:
•Activate mast cells locally
•Cause histamine release
•Produce a visible rash in that exact pattern

That’s why you literally see the imprint of the wrinkle—it’s almost like your skin is “printing” the pressure.

❗Possible Exacerbations:
•Ehlers-Danlos syndrome → more fragile skin + altered pressure distribution
•Postural Orthostatic Tachycardia Syndrome → nervous system hypersensitivity
•MCAS → chemical overreaction

Together, they amplify:
•Skin sensitivity
•Nerve signaling
•Inflammatory response

😭Things that often make it worse:
•Heat (warm sheets, body heat overnight)
•Sweat
•Rough or textured fabrics
•Tight clothing or seams
•Lying in one position too long
•Flare days (when your mast cells are already “on edge”)

⚕️I spent two decades being misdiagnosed by several dermatologists. I was treated for psoriasis, eczema, dermatitis, allergies, fungus and yeast. I spent thousands of 💲 on testings, creams, ointments and pills. I changed skin products and laundry supplies, tried many fabrics and fits of clothing. All to no avail. Rashes so bad I had to sleep with ice packs to calm the itching; hid them under my clothes during the day so I didn't scratch. When I finally learned about MCAS (through my EDS research), and was later diagnosed with both, everything changed. Treating the MCAS with mast cell stabilizers & learning and avoiding triggers, have changed my life. Yes, I still have occasional reactions. But they aren't ruling my life anymore.

❓So when people say, "Why chase down a diagnosis if there is no cure?"
When you're living with daily miserable symptoms (not only skin, but also severe g.i., neurological and rhinitis issues), a diagnosis can lead to correct symptom treatment, and therefore a better quality of life! It has absolutely been worth it to find correct diagnoses for me. Even if there is no cure. And even if it took searching until I was 40 years old to find it.

👊🏻Don't give up! Fight like a zebra! 🦓

What are your symptoms, and what has helped you?

**Not my photo, but the closest I could find to my own skin from bed sheets**