From Mystery Symptoms to Ehlers-Danlos: My Story
God has a way of offering us strength when we don’t think we can handle one more thing. And somehow, we pull through. Again and again.
I think back to when I gave birth to my fourth baby. My oldest was only five. Five! How did I survive that season? But I did. We do. We find the strength. And later, we look back in amazement, and maybe a little bit of pride, like… yeah, I did that.
That’s exactly how I feel about this whole complex medical whirlwind. I learn one big thing, only to turn a corner and get smacked with something even bigger. And somehow, the first big thing suddenly doesn’t feel that big anymore.
So my story started with a lot of unanswered aches and pains. I wrote about that here.
Last I left off, I had just been diagnosed with syringomyelia. It’s a condition where a fluid-filled cyst, called a syrinx, forms inside the spinal cord and takes up space it shouldn’t. Over time, it can press on nerves and cause pain, weakness, or even loss of function. It usually has a cause- like Chiari malformation or severe spinal trauma- but I had neither. That puts me in the “idiopathic” category, meaning no known cause.
And if you know me at all, you know “no known cause” is just not going to cut it.
I research everything. When my daughter wanted chickens, I didn’t just wing it. I learned every detail, stocked up on medical supplies, picked out organic feed, learned coop designs, and started a backyard flock. That turned into ducks, geese, and eventually Holland Lop bunnies. So no surprise, I wasn’t about to stop digging into this either.
If I’ve learned anything over the past twenty-five years of medical mysteries, it’s this: no one will advocate for you like you. You have to do it yourself.
After the syrinx diagnosis, I had more MRIs, Ultrasounds, a three-day EEG, a cognitive test I failed, new bloodwork, and appointments with a neurologist, a rheumatologist, two neurosurgeons, and multiple ER visits. And just to keep things interesting, I was also diagnosed with an atypical thyroid nodule. It had nothing to do with any of this, but it was in my body, so it needed to be dealt with.
Meanwhile, I started getting flushing episodes, rashes, and hives. My heart rate continued to skyrocket. I was beyond exhausted, barely functioning some days. Something else was going on.
I joined a syrinx support group and started seeing a lot of overlap in the stories. Heart rate spikes. Extreme fatigue. Dizziness. People talking about POTS. Then I noticed even more patterns- people talking about hypermobility, chronic pain, skin rashes, migraines, and just feeling completely wiped out.
That’s when I came across the name of a condition I had never heard before. Ehlers Danlos Syndrome. I joined a Florida group for it. I read through posts. I asked questions. And I couldn’t believe what I was reading.
I checked every single box.
Here’s just a few of the common symptoms of hypermobile Ehlers Danlos Syndrome (hEDS):
- Joint hypermobility or flexibility (like double-jointed elbows, knees that bend backward, etc)
- Joint pain, popping, and frequent subluxations or dislocations
- Chronic fatigue
- Easy bruising or fragile skin
- Slow wound healing
- Digestive issues like constipation, reflux, or feeling full quickly
- Dizziness, lightheadedness, or racing heart rate when standing
- Anxiety or sensory overwhelm
- Stretchy or soft skin
- Spine and neck instability
- Headaches or migraines
- Feeling like your body is falling apart but being told everything looks “normal”
That list barely scratches the surface. But it felt like a mirror. I ran it by a few doctors. My primary care doctor looked at me like I had three heads. The neurologist thought it was an interesting theory. The rheumatologist actually suspected it. The neurosurgeon looked at me like I was nuts. But no one could really test for it or help me.
Through the Florida Facebook group, I kept hearing about a doctor in Clearwater named Dr Treviño. So I made an appointment for August.
At the same time, I was working on the thyroid issue. Ben took me to the Clayman Thyroid Center in Tampa. They’re experts in this stuff. They did the ultrasound, biopsy, and bloodwork all in one day. I got the bloodwork results the same day, and the very next morning the doctor called with the recommendation to remove half of my thyroid. Surgery was scheduled.
And wouldn’t you know it, that same day, I got a call from Dr Treviño’s office. They had a cancellation and could see me that week. My appointment was bumped up almost 4 months!
I went in prepared to be disappointed. I’ve had 25 years of that. But this time was different.
He listened. I told him about my fatigue and heart rate. I brought in graphs from the heart rate monitor I had been using. They showed my heart rate jumping into the 140s and 150s with basic activity like showering or standing. My heart rate would stay over 110 for hours at a time no matter what I was doing. He had me lay down and then stand still for ten minutes. My heart rate stayed elevated the whole time.
He confirmed I have POTS- postural tachycardia syndrome.
Then we did a mobility test. I scored 7 out of 9 on the Beighton scale, which confirmed hypermobility. We talked about my skin reactions, the hives, the burning scalp, the flushing. He said those are symptoms of something called MCAS—mast cell activation syndrome. And I’ve officially been diagnosed with that now too.
He told me it’s very common for people with hEDS to also have MCAS and POTS. It’s a trifecta of sorts. And when I brought up the mold exposure, things started making more sense.
I’ve felt many of these symptoms since I was ten years old, so I don’t believe mold caused it – but I do believe it made things worse. Mold exposure can trigger mast cell reactions and make autonomic symptoms much more intense in people who are already genetically susceptible. For me, it seems the mold brought on the MCAS and made my POTS spiral. My body had been compensating for a long time, and the mold just pushed it past its limit.
Dr Treviño explained that because of hEDS, the tissues in my body are too stretchy and too weak to provide proper support. That includes my blood vessels, my spine, and even the tissue around my organs. That’s why blood pools in my legs when I stand up. That’s why I feel like I’m going to pass out. That’s why I’ve felt completely wiped out for most of my life. That’s why I’ve had neck issues and disc herniations without injury. That’s why my spinal cord developed a syrinx.
Suddenly, everything made sense.
It’s a lot to carry- and I’ve come to see that maybe this is my cross to bear. Not in a hopeless way, but in the way Christ asks us to carry what’s hard and walk with Him anyway. I don’t always carry it gracefully, but I carry it with love- especially for my kids.
The best part is that now that we know the root cause, there’s a plan to keep it from getting worse. If we can stabilize my spine and support my autonomic system, we might be able to stop the syrinx from growing.
First up is thyroid surgery. Then I’ll focus on healing. And next, I need to find a physical therapist who understands hEDS and POTS. All of my PT will need to be done seated or lying flat. Swimming, gentle rowing, or specific floor work might help. I’ll need to be careful, especially with the syrinx in my spinal cord.
Because hEDS is genetic, my motivation to get answers has never just been about me. It’s always been about my kids. They’ve been my reason for everything, and they always will be. Once I recover from surgery, I plan to take them to see Dr Treviño as well. If there’s even a chance they have this, I want to help them get ahead of it. I’ll also be starting heart medication after surgery, and I’m hopeful it’ll help me get a better handle on the POTS symptoms.
At my first appointment, Dr Treviño told me I’m currently a 9 out of 10 when it comes to disability. His goal? To get me down to a 2. That was the first time I didn’t just feel heard — I felt hope. For the first time in years, I left an appointment believing I could actually start to feel better.
If you’re someone who prays, I’d be so grateful for your prayers — for peace in my heart, strength in my body, and for Our Blessed Mother to stay close to me, my husband and our children through this next chapter. I know she’s near, and I lean on her daily.
Please also join me in praying for anyone else walking a similar path. For those searching for answers, feeling unheard, or carrying pain quietly, may they find comfort, direction, and rest in the arms of Jesus.
“Come to me, all you who are weary… and I will give you rest.” (Matthew 11:28)
Blue skies and endless adventures,
Heather
In Case Any of This Sounds Familiar:
I keep sharing what I’ve learned because I know I’m not the only one walking through this. The medical system is missing too many of us. If anything I’ve shared sounds familiar, here’s a simple breakdown of some of the conditions I mentioned.
What are these conditions?
Hypermobile Ehlers-Danlos Syndrome (hEDS)
A genetic connective tissue disorder that causes overly flexible joints, fragile skin, chronic pain, and instability in the spine and other body systems. It affects how collagen works throughout the body. Learn more: ehlers-danlos.com/heds
Postural Orthostatic Tachycardia Syndrome (POTS)
A type of autonomic nervous system dysfunction where the heart rate jumps abnormally high when standing. It can cause dizziness, fatigue, brain fog, and feeling faint or shaky.
Learn more: dysautonomiainternational.org/pots
Mast Cell Activation Syndrome (MCAS)
A condition where mast cells release chemicals in the body at the wrong times, leading to rashes, hives, flushing, swelling, allergic-type symptoms, and increased sensitivity to foods, chemicals, or scents. Learn more: tmsforacure.org
What’s the connection?
These three conditions often show up together. Many people with hEDS also develop POTS and MCAS. In my case, mold exposure may have been a major trigger. For others, it could be trauma, illness, or even surgery that sets things off. The more we understand, the better we can begin to heal.
More Resources:
Dr Miguel Treviño – Clearwater, FL (Telehealth available) https://www.doctortrevino.com/
Invisible illness. In plain sight. Join 100,000+ members using the wearable platform designed for illness, not fitness.Visible Arm Band – Learn more about Visible here.
Buoy Hydration – Rescue Drops & Salt – 1,215mg Electrolytes Per Serving
If this story resonated with you, I’d love to stay connected.
You can find more updates, free printables, and everyday snapshots of our life (and our backyard farm crew) over on Pinterest, or explore all my favorite resources and links here: linktr.ee/sunflowerisle.