The Connective Issue/Ehlers Danlos Myrtle Beach

04/15/2026

No, I'm not actually "fine." Even on a good day, I'm in pain.
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Maybe you saw me out and about yesterday, and today I'm in bed.

Maybe we made plans this morning, and I have to cancel this afternoon.

Maybe I'm doing my routine one minute at the PT office, and suddenly I'm in the middle of a POTS episode requiring laying down, fluids, salt, ice and a ride home.

3 out of 7 days could have been a horrible migraine, hip and back pain so bad I couldn't get comfortable.

Last night could be a mast cell reaction so bad that I was in the beginning stages of anaphylaxis.

This week was three days of excruciating bladder pain and urgency from interstitial cystitis.

Last week I played tug of war with my dog and flared up my tendonitis so bad I can barely use my right arm.

I probably forgot to call/text you back... forgot an appointment or obligation... forgot something at the store, or what you said earlier, the word I wanted to use or why I walked into the room... because brain fog is real around here.

I slept weird, subluxed my shoulder, and have shooting pains so bad I'm in tears. Or my knee...

I was accidentally exposed to gluten while eating out and now have horrible stomach cramps, extreme diarrhea, nausea, vomiting and heartburn for the next 6 hours. And it gave me a migraine, and a skin rash that will itch uncontrollably and take weeks to get rid of.

I walked too much today and flared up my achilles, my plantar fasciitis, and the arthritis in the tops of my feet. Will take a few weeks to calm down.

I tried to eat a tiny bit of dairy (again) and now I have rhinitis, flushing and a rash, and an upset stomach.

I sat for too long today and flared up my tail bone, s.i. joints and lower back pain.

I accidentally ate tomato sauce and had an "allergic reaction" (actually MCAS)...again.

My scalp hurts on the back of my head, headaches, neck pain...

Maybe the barometric pressure changed and flared up so many different things at once, all I can do is cry and pray for relief.

Maybe I'm nauseous and vomiting and can't pinpoint which of the hundred things it could be.

Almost nightly, so many things hurt that it's hard to get comfortable enough to stay asleep.

Maybe I'm so bone weary tired it's hard to get out of bed.

Maybe I'm so mentally exhausted I can't muster fake happiness right now, so I'll sit alone and not hurt my loved ones.

I'm probably feeling guilty right now about something.

I'm always anxious about my future.

I'm always frustrated about what I've lost due to chronic illness.
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This absolutely heinous illness really is THAT complicated and all-encompassing. These are just a FEW examples from the past two weeks of my life. Every single bodily system involved. Every minute of every day something is wrong in my body-actually several things at once, never just one. I have not been pain free for one day since I was a young teen. I'm great at masking. Pushing through. Smiling anyway.
Because what is the alternative?

It's too much and too tiring to explain everyday. I am weary, yet thankful to still be here.
But no, I'm never actually "fine."

04/15/2026

Pain in the back of your head? Scalp tenderness? Headaches/migraines? It could be Occipital Neuralgia. Mine has been flared up for a few days.

CCi + EDS + POTS + MCAS = "the perfect storm"
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Occipital neuralgia happens when the greater/lesser occipital nerves (running from the upper neck to the scalp) get irritated or compressed.

•Common symptoms:
~Scalp pain or “bruised hair” feeling (even light touch hurts)
~Pain at the base of the skull
~Shooting, burning, or electric pain up the back of the head
~Headaches that can mimic migraines
•Pain triggered by:
~Lying on your head
~Moving your neck
~“my scalp hurts”

🩻Ehlers-Danlos syndrome is a huge contributor:
•Ligaments are lax → neck instability
•Muscles overcompensate → chronic tightness
•Tight muscles compress occipital nerves

🩻Craniocervical instability (CCI)
•This is one of the strongest links to occipital neuralgia.
•CCI can:
~Shift how your skull sits on your spine
~Stretch or compress nerves at the base of the skull
~Cause constant micro-irritation of occipital nerves
•Symptoms overlap heavily:
~Head pressure
~Neck pain
~Headaches at skull base
~Neurological weirdness
* Occipital neuralgia is very common in people with CCI.

🩻 Cervical Degenerative changes can:
~Narrow spaces where nerves travel
~Cause inflammation around nerve roots
~Lead to secondary muscle spasms
*This creates a perfect storm:
Structural compression + muscle tension = nerve irritation

🩻Postural Orthostatic Tachycardia Syndrome (POTS)
•Not a direct cause, but it amplifies everything:
~Reduced blood flow → muscles fatigue faster
~Autonomic dysfunction → increased pain sensitivity
~Neck/shoulder tension worsens with upright posture
*POTS makes the pain feel louder and harder to recover from

🩻Mast Cell Activation Syndrome (MCAS)
•Mast cells release inflammatory chemicals near nerves
•Can cause nerve hypersensitivity
Triggers:
~Pressure
~Stress
~Poor sleep
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Once the cycle starts, you’re dealing with a multi-layered pain loop:

Instability (EDS/CCI)→ Muscle tension
→ Nerve compression (occipital neuralgia)→ Inflammation (MCAS)
→ Amplified pain (POTS + nervous system)

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Do you experience Occipital Neuralgia?
What helps?

04/13/2026

🙋🏻‍♀️Type A here, still working on this one...🥴

04/12/2026

This chronic illness has definitely put some limitations on how I do my art now. My hand is not as steady, my stamina is not there, posture to think about, sometimes pain after ... But it's still a relaxing pasttime.

04/11/2026

Anyone else wake up in the middle of the night or early morning with internal tremors? Maybe a little tachy and short of breath? Ears ringing...Sometimes even externally shaky?

I'm fighting this every night right now. I figure it's stress related...life just has my system out of whack again. This issue comes & goes for me. I'm already on Trazadone and Hydroxyzine to help me sleep through the pain. What are y'all doing for this problem?
🩻⚕️🩻⚕️
Nighttime autonomic “surges” (very common in POTS/dysautonomia):

1. The body may be flipping into a sympathetic (fight-or-flight) spike as it transitions between sleep stages.
•This can feel like:
~internal vibrations/tremors
~heart racing
~air hunger
~adrenaline rush feeling
~worse when lying still, better when upright

*Getting up & moving around makes it better - that’s classic for autonomic dysfunction.

2. Blood pooling / low circulating volume overnight
•When you’re lying still for hours:
~blood can pool
~circulation gets sluggish
~your body compensates with a surge of adrenaline when you wake

*That surge = tremor + tachy + “wired but exhausted” feeling

3. Histamine + cortisol timing
•In people with Mast Cell Activation Syndrome or histamine issues:
~histamine often spikes overnight / early morning
~cortisol also rises early morning

*That combo can trigger:
~tremors
~heart racing
~wake-ups you can’t settle from
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It’s worse when you try to go back to sleep🤷🏻‍♀️

•When you wake and stay still:
~blood pooling persists
~nervous system stays dysregulated
~your brain interprets symptoms as stress which amplifies the loop

•When you get up:
~circulation improves
~vagal tone improves
~symptoms ease
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I definitely feel better about it mentally since I figured out what it was, and that it's a common problem in POTSies. But man, it's on my nerves!😵‍💫🫨🥴 Docs say beta blockers could help, or even a Parkinson's medication, but I'd really rather not go that route yet...

Do you have this problem? What helps?

04/11/2026

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!