The Connective Issue/Ehlers Danlos Myrtle Beach

08/23/2026

My sweet boy knows when I don't feel good.

Migraine day😔

On a positive note, I got a home oxygen concentrator! Passed down from my dad's neighbor who got a new one.

Dr. Maitland prescribed a portable oxygen concentrator for me last year when I saw her, but insurance wouldn't cover it. I feel very blessed to be able to use this one. I cannot travel with it, but I'm home most days anyway. Praying it helps with symptoms 🙏

08/20/2026

📣 UPDATES 📣

HIPS:
Dr. Arpey, who ordered the MRIs, does total hip replacements, but has never worked on an EDS patient...
Is referring me back to Dr. Pullen (the first hip doc I saw), who does arthroscopic repairs, HAS worked on EDS patients, and ordered a CT arthrogram that didn't show the soft tissue damage...
To see what should be done about the tendon tears in my case.

So now I'm waiting on another virtual appointment 🤦‍♀️

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AND ....on top of everything, I got my teeth cleaned yesterday and I've chipped a filling, that can't be repaired because the tooth is cracked in two places, so now I need a crown.

AND I have some gum recession & enamel loss, that could be caused by EDS itself -or- medications -or- drinking electrolytes all day, everyday that have salt and citric acid -or- being a mouth breather bc of my deviated septum (I guess that surgery is back on the list🙄)

I am OCD about my teeth and oral hygiene. I have never had a cavity. I've never had gum disease. I've rarely had any plaque and am always praised by the hygienist. The filling was for a hollow place that formed in that tooth as a baby when the tooth came in. I have always had recurring nightmares about my teeth falling out...it's one of my greatest fears. I was really hoping to escape this life with a head full of healthy teeth 😭

And yes, I realize in the grand scheme of my medical chaos, this is the least of my worries. But it's just one of my "things" ya know?

And it's gonna cost me $600!!! 😵‍💫
But I am thankful my insurance is going to cover half, and I don't have to pay the whole $1200. 🙏
And I'm thankful I've had healthy teeth all these years bc I know a lot of EDS patients don't.

08/19/2026

Results of MRI, both hips:
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RIGHT HIP:

•High-grade partial tearing of the gluteus medius tendon & mild gluteus minimus tendinosis:

-The gluteus medius & minimus are key muscles on the outside of your hip (the hip abductors) that help stabilize your pelvis when you walk. My gluteus medius has a significant (high-grade) partial tear, meaning a large portion of the tendon is damaged but not completely severed. The gluteus minimus shows tendinosis, which is irritation, wear & micro-tearing from chronic stress or overuse.

•Degenerative tearing of the labrum:

-The labrum is a ring of cartilage that acts like a gasket to cushion & secure the ball-and-socket joint of your hip. I have a degenerative (wear-related) tear running across the top, front & back parts of it.

•DJD (Degenerative Joint Disease)/ Degenerative spurring:

-This is a medical term for osteoarthritis. The report notes bone spurs (spurring) on the hip socket (acetabulum) & the ball of the thigh bone (femoral head), which happens naturally over time due to wear & tear.

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LEFT HIP:

•Partial tearing of the gluteus medius & minimus tendons:

-Similar to the right side, both of my outer hip stabilizing tendons show partial tearing & wear.

•Degenerative anterosuperior labral tear:

-I have a wear-and-tear tear in the front-upper portion of the labrum cartilage cushion in my left hip socket.

•DJD / Subchondral cystic change & bone spurring:

-osteoarthritis is present here as well, characterized by bone spurs & small fluid-filled pockets (subchondral cysts) in the bone just beneath the cartilage of the hip socket, typically caused by joint stress.
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WHAT COULD HAVE CAUSED THIS?

Connective tissue abnormalities (making the tendon fibers more fragile), combined with gait and weight bearing changes due to spinal/ s.i. joint/ pelvic degeneration, plus two pregnancies, have exacerbated what "normal wear & tear" should be for someone my age.
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WHAT CAN BE DONE ABOUT IT?

For most people, physical therapy and injections would be the first-line conservative treatment. However, I've been doing those for years with no positive change.

Surgery would be the next option, but because of EDS & MCAS, requires a much more specialized plan, an EDS knowledgeable surgeon, longer immobilization afterwards/longer healing time, and more risk for complications/re-injury.
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WHAT IF I DO NOTHING, AND CONTINUE ON AS I HAVE BEEN?

If those partially torn tendons finish tearing completely through, there is a risk that the gap between the torn tendon and the bone is too great for reattachment. I wouldn't be able to move my leg. So they would have to cut my gluteus maximus (the big butt muscle) & stretch it around to connect to the head of the femur, just so I could walk.
This is a big NO for me😵
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I will be following up with both hip doctors I've seen recently, and see what they come up with. I'll update as I get new info.

08/17/2026

Nothing like a chronic illness making a routine scan unbearable 🙄😒😭

I've had so many scans in my life I should be a glow in the dark magnet by now. But man, they're getting harder the older I get. And I have a pretty darn high pain tolerance.

MRI on both hips today. Because of my spinal cord stimulator, they can't do both at once. I have to take a break in between so my implant doesn't get too hot. I'm on that break now.

Laying flat kills my back, especially that hard table. I can't lift my knees because they need my legs straight. They also need my foot/leg turned in, so I have to hold it there, forcefully, bc their strap and sandbag weren't enough to keep it in place. The head cushion is awful on my neck. My shoulders are subluxing. I'm breathing so deeply through the pain, she has to repeat part of the scan because it was too much movement. Fighting the urge to cry, the intense pain, the fan blowing too hard in my face-taking my breath...
Trying to stay in my slow deep breathing and prayer to keep calm...
I've never been so close to tapping out.
By the time she pulled me out I had tremors.
I feel like the biggest wuss😡

And I have to go back in there in about 30 minutes and do it again.

Rory Feek +Joey to the rescue...my favorite album when I need the Lord

On Amazon Music

08/14/2026

“Once recognized, never overlooked.”

It’s the philosophy at The Center for Neuro-EDS and Craniospinal Disorders (home of world-renowned neurosurgeon, Dr. Paolo Bolognese). It’s a breakthrough acknowledgment that patients with connective tissue disorders often belong to a subgroup that suffers from complex neurological conditions, like , , , , , , , , , and more.

It is with gratitude that we congratulate Dr. Allison R. Bloom, Dr. Ilene S. Ruhoy, Dr. Randall A. Dass, Dr. Amanda Lerner, Dr. Paolo B. Bolognese, and Dr. Petra M. Klinge on the preprint release of their groundbreaking position paper, “Defining Neuro-EDS: A Neuro-Predominant Phenotype in hEDS/HSD and Related Heritable Connective Tissue Disorders.”

Thousands of patients have received life-changing and life-saving interventions as these pioneers in medicine have learned (from the patients themselves) that connective tissue biology often gives rise to a collection of neurological, cranial, spinal, autonomic, neurovascular, and immune-inflammatory manifestations.

An estimated 10-30%+ of hypermobile patients may belong to a neuro-EDS phenotype. At last, there is a vocabulary and a growing consensus around how to recognize this suffering and offer validation, diagnostic clarity, and treatment. We encourage you to learn from this important article, to share it widely, and to become part of the conversation. If you see yourself in this article, we encourage you to show it to members of your medical team so they can, at last, see you too.

It is our ardent hope that this conversation and this work is just the beginning — that neuro-EDS patients, once recognized, will never again be overlooked.

POSTQUAM VISIBILE, NUMQUAM NEGLECTUM

https://www.preprints.org/manuscript/202608.0567

08/07/2026

A good read helping to explain why Hypermobile Ehlers Danlos Syndrome is so all-encompassing of every bodily system, how it can be so complicated to understand and treat, and how research is evolving.

For most people living with hEDS, the condition does not travel alone.

08/06/2026

Soooo I've learned something new. Sleeping with "Dinosaur Hands" can be an EDS or ADHD/autism thing. I've done this my whole life. In the past few years, I've started having nights where I'm curling them really hard, and sometimes cause myself wrist pain for weeks. I do it unconsciously. I'm dealing with maybe the worst one now. I'm pretty sure I've sprained my own wrist (absolutely possible from what I've read). For the injury, I've tried a hard brace off and on, but when I take it off, it's more stiff and painful. So I've switched to a softer brace. I'm gonna start some ice and anti-inflammatories.

My question is:

What do you all do to prevent this at nighttime? The hard brace can cause muscle guarding and stiffness/pain, so should I just always sleep with a soft brace?

Like I need one more dang thing making it uncomfortable to try to sleep🤬

08/06/2026

For people living with hypermobile Ehlers-Danlos syndrome (hEDS), joint pain is only one part of what they experience.

Many also live with migraines, digestive problems, dizziness, rapid heart rate and other symptoms that, for years, were often treated as separate conditions.

Today, researchers at MUSC are working to better understand those connections.

Dr. Chip Norris and his team are studying how the immune system, nervous system and gastrointestinal system communicate to learn why these conditions so often occur together.

Their research could provide new insight into hEDS and ultimately help improve how this complex disorder is understood and treated.

Read more: https://musc.co/4cl0Ulw

08/04/2026

UPDATES:

Regarding my hips:
-The EDS clinic referred me to Dr. Pullen. He was very knowledgeable about EDS & MCAS and how they complicate surgeries. But he doesn't do total hip replacements, and doesn't think his arthroscopy would help me.
-He referred me to Dr. Arpey in Summerville (and said he treated EDS patients). I saw Dr. Arpey, and he's never treated one EDS patient 🤦🏻‍♀️ But, he was very patient, kind and thorough, and is going to confer with his colleagues to find me a hip surgeon who does work on EDS patients, if I do end up needing surgery. Based on the CT arthrogram, physical exam, and location of my pain...he doesn't think my biggest pain is coming from the ball & socket itself - therefore a total hip replacement wouldn't be appropriate. He suspects it's soft/connective tissue damage. And he needs an MRI to see that
🤬🤬🤬(I could have had an MRI arthrogram had it not been for this dang spinal cord stimulator)
I'm gonna be scanned into bankruptcy 🫪🙄😭
-MRI for both hips scheduled 8/17 in Georgetown

-Still waiting for scheduling call about radio frequency ablation (1st block) on my neck

-New patient appointment with shoulder doctor Aug 24th (Charleston)

-New patient appointment with gastro doctor Sept 22nd (Charleston)

Round & Round we goooo😵‍💫