My CRPS Diagnosis: The Road To Answers (And More Questions)

Everything happened so quickly.

One day, I was completely normal. The next? Not so much.

I was doing the dishes when, out of nowhere, a searing, aching pain erupted in my hands. I doubled over, ran upstairs to my mom—who was recovering from surgery—and told her what was happening.

We thought it was just an allergic reaction. I popped a Benadryl and called it a day. Little did we know, that moment was the beginning of an entirely new chapter in my life.

From that day on, everything changed—physically, emotionally, mentally.

My hands no longer looked the same. They went from slim and defined to swollen, red, and puffy. They still don’t look the way they used to. The pain took a toll on me. Simple things I once did without thinking became impossible. Some of it sounded ridiculous, even to me—like not being able to scoop my own ice cream. The cold was too harsh, triggering flare-ups that sent shockwaves through my nerves.

I had gone from being a normal, healthy girl to waking up in constant pain. And with that, my mental health started to spiral.

My home life was already complicated at the time, to say the least. Adding chronic pain into the mix only made things harder. Depression, anxiety, loneliness—it all hit me at once.

And the hardest part? No one really knew how to handle it.

I remember sitting in the car with some friends, casually mentioning the pain I was in… and the conversation just stopped. Silence. No one knew what to say. No one knew what to do. My relationships started to shift, and I felt like I was slipping away from the people I once leaned on.

Something had to give.

I was drowning—physically, emotionally, mentally. I needed relief. I needed answers.

So we started searching.

Hospital after hospital, appointment after appointment, yet the doctors all said the same thing: We don’t know what’s wrong with you.

I was referred to specialist after specialist—from orthopedics to rheumatologists to therapists to neurologists—each one searching for clues, yet no one had the full picture.

A full year passed before I finally sat in front of a neurologist who pieced it all together.

After countless tests, endless questions, and being poked and prodded more times than I could count, he closed his file, looked me in the eye, and said:

"You have Complex Regional Pain Syndrome."

I glanced at my mom. She glanced at me.

We were both thinking the same thing: What does that mean?

Then, he started listing the symptoms—the pins and needles, the fire-like sensations, the swelling, the skin discoloration—all of it sounded like me. My breath caught in my throat.

For the first time in forever, I felt seen. I felt heard.

He didn’t tell me it was all in my head, the way so many others had.

He didn’t tell me I just needed to “talk about my feelings” and I’d magically get better.

No. He gave me something real. A real diagnosis.

And then he added one more thing.

"You also have carpal tunnel in both wrists."

Just like that, my entire world made sense again.

My mom and I shared another glance—this time, with watery eyes and something we hadn’t felt in a long time.

Hope.

For once, we weren’t wandering blindly. We had a name, a direction, a next step.

We could search for treatments.

We could research medications.

We could find coping strategies.

And search, search, search—until we finally found the relief I so desperately needed.

Since then, it’s been a journey of trial and error. I’ve undergone dozens of procedures—like nerve blocks—along with various medications, physical therapy, and talk therapy. Unfortunately, most procedures didn’t provide long-term relief for me. But please, if you’re considering these options, don’t let my experience dictate your choices.

There is no one-size-fits-all treatment for CRPS. Everyone’s journey is different. Please consult your doctor and discuss what might work best for you.

(Disclaimer: This information is for educational purposes only and should not be considered medical advice. Please consult a qualified healthcare professional before making any decisions regarding your health, diagnosis, or treatment.)

As for medications, I had my share of struggles. Some dropped my blood pressure so low I fainted. Others gave me nightmares. One caused severe nausea. After trying multiple options, I found that coping strategies work best for me.

For example, when my hands overheat, sometimes wrapping them in a cool, wet towel helps. Other times, it backfires and makes the flare-up worse. I’ve learned I have to be strategic about how I manage my symptoms. And because my pain has spread to other parts of my body, I have to be even more mindful of what I can and can’t do.

One of the most important things I’ve learned: Identify your triggers.

Whether they’re physical or emotional, take note of them. Knowing what worsens your pain helps you avoid unnecessary suffering—or at least prepare for it. If you have a caretaker, communicate with them so they can support you.

Keeping track of symptoms is also a game-changer. CRPS can cause brain fog, making it hard to recall details at doctor’s appointments. Try journaling your symptoms, asking a caretaker to jot things down, or even recording short videos for yourself—like a personal health vlog.

This Complex Regional Pain Syndrome journey requires patience. And trust me, I know—it’s easier said than done.

So, here’s a challenge for you:

Celebrate the small wins.

Did you get out of bed today? Celebrate.

Did you figure out a new trigger and find a way to manage it? Celebrate.

Did you go a whole day without criticizing yourself for things outside your control? Celebrate.

Give yourself grace.

This road is long, uncertain, and full of trial and error. But being kind to yourself makes it a little easier to walk.

Be patient. Track your symptoms. Communicate with your doctors and caretakers. And above all—don’t lose hope.

A diagnosis isn’t the end of the road.

It’s the beginning of understanding yourself in a whole new way.

With Warmth & Resilience

Tala Röse