Most people don’t think twice about walking across a room, bending to load the dishwasher, or carrying a basket of laundry. But when you live with hypermobile Ehlers-Danlos Syndrome (hEDS), even the most ordinary tasks can feel like trying to hold your body together with string and a prayer.
This is the life I’ve known for years. A life of invisible battles and constant adaptations. And while I’ve gotten used to hearing “but you don’t look sick,” the pain I carry isn’t just in my joints...it’s layered, complex, and deeply misunderstood.
So, where does the pain from hEDS really come from? The answer is… everywhere.
💥 1. Joint Instability
In hEDS, connective tissue is too stretchy and fragile. Ligaments can’t hold joints tightly in place, so things move—sometimes just enough to cause that deep ache, and sometimes enough to dislocate completely. I’ve had days where something slipped out just walking across the kitchen, and other times from rolling over in bed. These aren’t dramatic injuries. They’re just... life with hEDS.
💪 2. Muscle Overuse
Because my joints are unstable, my muscles have to do the work of keeping them in place. That constant effort leads to muscle tension and fatigue...like my body’s always trying to “brace for impact.” It’s exhausting in a way that sleep alone can’t fix.
One place I feel this most intensely is in my back. From the moment I get out of bed, it starts building.
The best way I can describe it is this:
It feels like the burn you get at the gym when lifting weights and your muscles start to scream at you.
Now imagine that burning never stops.
That’s what my back feels like all day long. It’s a dull roar in the morning, but by evening, it’s an unbearable fire.
No matter how I sit, stand, lie down, or stretch, it never truly goes away. It’s like my back muscles are stuck in “workout mode” without rest or relief.
🔁 3. Repetitive Microtrauma
Even small, daily movements can cause ongoing wear-and-tear injuries. Picking something up off the floor, opening a jar, or folding laundry can lead to days of soreness or swelling. There’s no “safe” movement, just less damaging ones.
This is what happened when I tore my TFCC (triangular fibrocartilage complex) in my wrist.
All I did was water my plants...repetitively, using a watering can. It didn’t feel like a big deal at the time. But the next day, I couldn’t twist a doorknob, button my pants, or turn the key in my ignition without excruciating pain.
I spent six months in physical therapy, trying everything. Eventually, I had to be persistent and push for exploratory surgery. It turned out that I had, in fact, torn my TFCC.
Fast forward ten years, and it happened again, but this time in my other wrist.
I was simply making the bed, lifting the corner of the mattress to tuck the sheets. My wrist dislocated, and the pain was instantly familiar. We were living in a new town, and I had to see a different doctor. I told them, “It feels just like last time...I think it’s a TFCC tear.”
But again, they insisted on six months of therapy first. I kept speaking up. And in the end?
I was right. Another torn TFCC. Another surgery.
Now I have to be extremely careful with how I use my wrists. I’m hyper-aware of how I lift things, twist, or bear weight. I’ve learned to pre-think every action...my brain is always working ahead of my body. There’s no autopilot. Every “doing” requires planning. Because with hEDS, repetitive movements don’t just tire us, they break us.
⚡ 4. Nerve Involvement
When joints slip or tissues swell, nerves often get caught in the middle. I’ve experienced everything from burning and tingling to electric-shock pain. It’s unpredictable and cruel, and it can come out of nowhere.
My worst nerve pain began after riding a roller coaster with a sudden backward launch. I felt a “stinger” in my neck that didn’t go away. MRI results showed bulging discs, congenital spinal stenosis, and severe narrowing around my spinal cord and nerves.
As a military spouse, I was treated at a naval hospital. I underwent a laminoplasty, but the surgery had to be aborted mid-procedure due to a leaking dura and my body’s inability to respond to anesthesia. After six months of recovery, I had a second surgery, an ACDF, which finally brought relief.
Still, I’ve never regained feeling in the tips of my right thumb and index finger. Nerve damage from hEDS doesn’t always heal - sometimes, we’re just left with what’s lost.
🔥 5. Central Sensitization
When you live with chronic pain, your body starts to learn it, too well.
Over time, the constant input of pain signals rewires your nervous system, creating a condition called central sensitization. It’s like your brain’s alarm system is permanently stuck in the “ON” position. Even when there’s no real danger, the body interprets normal sensations as threats.
Loud noises might make you jump. A light touch can feel like sandpaper. Gentle pressure feels like fire. You’re not weak or broken; your nervous system has just become too good at being on alert.
For me, there are days when I feel like I’m wearing my shoulders as earrings...they’re so tight and tense, like my body’s physically bracing for something to go wrong. And other days, the hair on my arms and legs stands up, like I’ve got the chills from a fever… except I don’t have a fever. I’m not even cold.
It’s just my nervous system misfiring.
It’s hard to explain to someone who’s never lived it. It’s not “anxiety.” It’s not “just stress.” It’s a full-body hijack that I can’t talk my way out of.
When it hits like that, there are only two things that seem to help:
🛁 A hot bath to settle my nerves from the outside in
🛏️ Or going straight to bed, hoping that sleep will hit the reset button
And usually, thankfully, by morning, my body has calmed. But it’s always there beneath the surface, waiting. And when you live with hEDS, you don’t just manage joint pain...you manage a nervous system in survival mode, every single day.
😴 6. Fatigue & Sleep Disruption
Pain messes with sleep, and poor sleep makes pain worse. Add in muscle fatigue, emotional exhaustion, and the constant mental load of managing symptoms, and it becomes a never-ending cycle. There are days I feel like I’ve run a marathon just from doing the dishes and answering emails.
I live in a body that asks a lot of me. Some days I can rise to meet the challenge. Other days, I need grace, rest, and a soft blanket.
But I’m learning to tell the truth about my pain...not to seek pity, but to offer perspective. If you’re living with hEDS, I hope you feel seen. And if you’re someone trying to understand a loved one with chronic pain, I hope this helps connect a few dots.
We are not fragile; we are resilient in ways most people will never fully understand.
And yes, sometimes, we really are just held together by string and a prayer.
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