The Connective Issue/Ehlers Danlos Myrtle Beach

The Connective Issue/Ehlers Danlos Myrtle Beach Spreading awareness by sharing my journey with Hypermobile Ehlers Danlos Syndrome.

I was supposed to be in Charleston today for a followup with the hip surgeon. Unfortunately, I am sick for the first tim...
05/27/2026

I was supposed to be in Charleston today for a followup with the hip surgeon. Unfortunately, I am sick for the first time since October😥 I've been doing so good about taking my elderberry syrup and liposomal vit c, adding oil of oregano and colloidal silver if I've been exposed or feel sick at all. And I've gone the longest I have in years without being sick. But, I had a busy few weeks with family and friends in town, went to the Broadway Theater three days in a row watching my son in a play (forgot to use my Nasodine after🤦🏻‍♀️), and probably wore myself down (all while taking care of a sick friend). What starts as a virus always ends up in a sinus infection and bronchitis for me. Every.Single.Time. Docs say I have chronic bronchitis with scar tissue in my lungs🤷🏻‍♀️ Anyway...lots of my own herbal teas/tinctures/natural remedies, nasal lavage, and breathing treatments (although the Albuterol is giving me longer/harder tremors now--mimicking a dysautonomia episode--I may switch that out for colloidal silver too). Made some onion syrup for the cough. I did go ahead with a video visit for some Prednisone because we're going out of town Monday, and this crap always hangs on for weeks. I hate taking it because even if I only take one dose in the morning, I can't sleep.
So now I won't see the hip doc until the end of June😭
Anyway...as you can see, I appreciate a mix of naturopathic and allopathic treatments. While I try as hard as I can to do everything as naturally as I can, this complicated disorder has led me back to some prescriptions, but I always ask lots of questions, do my own reading, and carefully weigh the pros and cons. I am grateful for the clinic and finally having some meds that are helping with some chronic symptoms of EDS.

As far as catching the crud--
It's rough dealing with all of our daily symptoms, AND being sick, AND the virus flaring up more chronic issues😵‍💫

What are your "go-to's" when you get sick?

ADHD anyone?I've never been diagnosed, but I'm starting to wonder…Lately I’ve been sitting with some uncomfortable self-...
05/20/2026

ADHD anyone?
I've never been diagnosed, but I'm starting to wonder…

Lately I’ve been sitting with some uncomfortable self-realizations in midlife. Lots of research + deep self reflection + two years of cognitive behavioral therapy…

For a long time, I’ve judged people, and myself, through a pretty specific lens: productivity, preparedness, punctuality, effort, planning ahead, and “trying hard enough.” I’ve equated effort with morality & worth in ways I’m only now beginning to question.

I’m quite annoyed at the current cultural trend of collecting diagnoses like identity badges. But I am starting to understand something different - there is value in correctly identifying patterns in ourselves, especially when those patterns are affecting our health, relationships, and sense of self worth.

Naming something accurately isn’t about labeling yourself…it’s about learning how to work with your own system instead of against it.

In my case, I’m beginning to recognize that many of the things I’ve always considered personality traits - emotional intensity, overthinking, perfectionism, constant mental activity, and difficulty relaxing… may also reflect long-standing attention and regulation patterns that were masked for years by intelligence, curiosity, and being a high-achieving “capable” female.

Looking back, there were always signs:

- constant internal narration/monologue and mental “noise,” never experiencing a quiet mind
- feeling like there are always “10 tabs open” in my brain
- getting deeply stuck in thoughts, songs, conversations, or memories replaying on a loop in my mind
- chronic over-preparing, researching every possible outcome, organizational satisfaction
- difficulty with rest unless everything feels “done enough” (I cannot enjoy hobbies without guilt - while household chores need to be done)
- strong boredom intolerance and always needing mental stimulation
- talking easily, getting bored in structured settings, being sensitive, being highly empathetic
- multiple academic paths and changing directions repeatedly
- lifelong doodling and pattern-focused creativity
- hyper focusing on one thing, then another
- a strong drive to give 110% in everything, even at personal cost / people pleasing
- skin/nail picking, fidgeting, needing to move/always “on the go”
- a preference for structure, patterns, and symmetry in art
- feeling mentally “on” all the time, even in sleep
- musical echolalia
- perfectionism with OCD tendencies
- competitiveness and high internal standards
- always wanting to learn how to do (xyz) myself, instead of outsourcing it. Multiple hobbies, interests and areas of study
- always feeling mentally exhausted/overwhelmed

From the outside, none of this necessarily looked like a “problem” that needed intervention. In fact, it probably looked like competence:
- being prepared, reliable, and highly capable
- doing well academically and being labeled “gifted”
- being the person who “handles things” or figures everything out
- appearing organized because of overcompensation and last-minute intensity
- seeming thoughtful, detail-oriented, or “just a perfectionist”
- masking overwhelm with performance, planning, and productivity

Because I was still functioning - and often functioning well - the internal cost wasn’t visible. Like many people, I learned to compensate early, adapt constantly, and meet expectations through effort rather than ease. What didn’t show was how much mental energy it took to hold everything together.

What I’m realizing now is that this kind of internal intensity doesn’t just stay in the mind forever. Over time, it can spill into the body: chronic stress activation, nervous system overload, sleep disruption, and worsening physical symptoms in systems already sensitive to stress.

For me, that intersects with conditions like connective tissue dysfunction, autonomic instability, and mast cell reactivity - where the nervous system and body are deeply intertwined.

I've been reading that midlife can become a turning point for the undiagnosed. Hormonal shifts, cumulative stress, and decades of compensation can lower the system’s ability to “mask” what was always there. What once looked like manageable overfunctioning, can start to feel like overwhelm, burnout, or loss of capacity. Also, ADHD symptoms can look different in men vs. women, and is more often diagnosed in young boys, while missed in girls.

This isn’t about collecting another set of letters, or excusing behavior. It’s about understanding cause and effect.
Because when I understand these things about myself more clearly, I can:

- stop projecting my coping style onto others as “laziness”
- soften the expectations I place on myself and other people
- reduce judgment and increase curiosity & empathy - for others AND myself
- recognize when “overfunctioning” is actually burnout in disguise
- learn how to intentionally calm my nervous system instead of constantly driving it harder
- support my mental and physical health in a more sustainable way
- and maybe, for the first time, allow rest without guilt attached to it

I still value effort, responsibility, and growth. But I’m starting to see that there is a difference between healthy discipline and a nervous system that never fully powers down.

Midlife reflection has a way of showing us patterns we were too busy surviving to notice earlier.
This isn’t about becoming someone else, or even disliking who I am. It's about finally understanding how I’ve always been operating, and learning how to work with it instead of against it.

So, whether I have ADHD or not, I am becoming more self-aware of behavior patterns. And for the sake of my chronically ill body, I desperately need my mind to “chill out”!

What are your thoughts/experiences on ADHD?





Sorry I've been quiet lately; I've been busy, which also comes with more recovery. Please feel free to join the group at...
05/18/2026

Sorry I've been quiet lately; I've been busy, which also comes with more recovery. Please feel free to join the group attached to this page and chat with one another, invite your friends who may need support, or plan local meetups!
My updates:

•I go May 27th for my followup with Dr. Pullen (MUSC Ortho who works with EDS patients, and was very knowledgeable), to get the results of the hip CT arthrogram, and find out if there's anything that can be done surgically to help. I was born butt-first and likely had hip dysplasia (45 years ago, no intervention). I have previously been diagnosed with arthritis, bursitis, bone spurs, labral tears and osteopenia (age 35), and was told I needed replacements, but was too young. We'll see what this scan showed, and hopefully get some sort of treatment plan in place, because my hips greatly affect my quality of life and ability to exercise/get around.

•I started LDN on May 3rd! It can take several weeks/few months to know if it's working, so I'll update more later, but I'm hopeful!! 🙏🏻🤞🏻
-The amount of constant pain I'm in every waking moment helps create a vicious cycle of inflammation and nervous system issues. And it just becomes mentally hard to handle. So praying hard that this will give some relief!
*I actually hate to take on another prescription, and if you know me, you know how natural-minded I am (I have a home apothecary!) I avoided rxs for years. However, chronic pain has made me desperate, and since I can no longer partake of other natural pain relief options🌿bc it became a trigger for my non-epileptic seizures/convulsive episodes, I feel stuck with no choice😥 (I refuse opioids--the side effects outweigh the benefits for me, and my tolerance is too high)
-Insurance did not cover it, and I had to get it from a compounding pharmacy. But it was only $40 for one month, so I'm thankful that it's affordable!
My P*P, Julie, at the EDS Clinic prescribed it for me.

Here are some links about how Low Dose Naltrexone can help EDS patients:

https://www.painri.com/post/ldn-low-dose-naltrexone-may-help-with-ehlers-danlos-syndrome-eds

https://www.ehlers-danlos.com/effective-doses-of-low-dose-naltrexone-for-chronic-pain-an-observational-study/








05/15/2026
05/10/2026

Chronic Pain in Ehlers-Danlos Syndrome: The Invisible Battle No One Sees

05/09/2026

Yes yes yes👏🏻
Great explanation of the negative feedback loop!

05/09/2026
The hip specialist at MUSC who works with EDS patients ordered an MRI arthrogram, but it had to be changed to CT because...
05/08/2026

The hip specialist at MUSC who works with EDS patients ordered an MRI arthrogram, but it had to be changed to CT because the settings for that aren't compatible with my spinal cord stimulator. I had the CT arthrogram this morning.
A hip arthrogram is where they stick a long needle deep into the hip joint using live X-ray guidance and inject contrast dye into the joint so doctors can see the labrum, cartilage, and capsule better on MRI/CT scans.
The painful part is that the hip joint is a tight enclosed space, so injecting fluid increases pressure inside the joint. If the joint is already inflamed, arthritic, stiff, hypermobile, or irritated, that pressure can cause pretty intense deep groin/hip pain.
They start with several layers of anesthetic, then a test dye, then some fluid, then the real dye.
For me, the joint resisted the injection and the fluid partly escaped into a nearby bursa, which can happen when the joint capsule is irritated or abnormal. The procedure can also flare the hip afterward because they’re literally distending the joint capsule with fluid.
Imagine trying to pump extra fluid into an already irritated, stiff socket deep inside your body. The hip joint doesn’t have much extra room, so the pressure can feel sharp, deep, achy, or like the joint is being forced open from the inside.
They also have to guide a needle through layers of tissue into the joint itself, so there’s soreness from that too. And you have to keep the foot rotated inward the entirety of both tests, which really hurt my hip😭
Oh, and EDS also changes how our bodies react to anesthesia and local numbing, so he had to give me extra injections and give them extra time to work. So I laid flat on my back on the hard table for 30 minutes, then another 10 minutes in the CT room. I've had three back surgeries and every single level of my spine is affected.
Needless to say, it was a painful day.

Mychart results are in, but I'll wait for the followup visit to summarize those. Incidental findings: I do have degeneration in my SI joints, which both my PTs suspected, and another cyst on my o***y... overachieving ole bitty🙄

I am SOOOO over being poked, prodded and tortured😡
I sure hope the doctor got all he needed from the CT to make a good intervention plan🙏🏻
Oh, and I'm very thankful that the entire staff was amazing.





WHAT IS THE MUSC EDS CLINC SUBSCRIPTION PLAN LIKE?Updates:*VISITS SO FAR THIS YEAR(including EDS knowledgeable specialis...
05/06/2026

WHAT IS THE MUSC EDS CLINC SUBSCRIPTION PLAN LIKE?
Updates:

*VISITS SO FAR THIS YEAR(including EDS knowledgeable specialist referrals)-
(~2 visits w/ Dr. Maitland + labwork - Oct-Dec 2025)

•Jan - First visit with Julie Zgambo (2 hours!)
•Feb - Followup with Julie (1 hour)
•Mar - Followup with Julie (1 hour)
•Mar - Tyler Rist - ENT (deviated septum)
•Mar - William Pullen - ORTHO (hips)
•Apr - Followup with Julie (1hour)
•Apr - Norris Lab - Bio bank research volunteer
•Apr - Chun Li - VASCULAR (compression syndromes, FMD)
•Apr - Ramsey Wehbe - CARDIO - POTS, heart
--------------
*FUTURE VISITS (so far)-

•May - labwork (cardio)
•May - CT angio - hips
•May - Followup William Pullen - hips
•July - James Eubanks - PHYS MED & REHAB (pain mgt)
•Aug - Alan Snyder - DERM (MCAS/rashes/biologic rx)
•Sept - Amol Sharma -GASTRO
•Nov - Carotid duplex (FMD)
•Nov - Followup Chun Li - VASCULAR (FMD)
•*Date TBD - referrals given: Sleep Medicine, Eichenger (shoulders)
---------------
*New meds have been helping!
*Julie is very kind, sympathetic & thorough
*Mychart communication has been very responsive/fast
*I am so thankful to finally see doctors who understand EDS & all its comorbidities!









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