10 Things I Wish People Knew About CRPS

Hi friends! 💖 After last week's post about my flare-up, I wanted to share a few things I wish more people understood about living with CRPS.

Disclaimer: This is my personal experience. Everyone's journey with CRPS is different.

1. It's Not "Just" Pain — It's a Whole-Body Experience

Complex Regional Pain Syndrome (CRPS) isn’t well understood, but it’s thought to involve abnormal inflammation or nerve dysfunction. It causes severe pain—often burning, throbbing, or stabbing. Even something as small as a light touch can trigger a flare-up.

Affected areas can change color, fluctuate in temperature, swell, stiffen, and lose mobility. But CRPS isn’t just physical. It's a constant battle between body and mind. For me, pain often worsens anxiety, depression, and stress. It's important to treat both the physical and emotional sides of the condition.

2. Even Small Tasks Can Feel Huge

Daily tasks like brushing my teeth, washing my face, or getting dressed can feel unbearable. This past week, I’ve needed help with even basic things—getting out of bed, changing clothes.

I suspect my CRPS may be spreading to new parts of my body, which, sadly, can happen. Some days, even breathing hurts. Every little action can feel like climbing a mountain.

3. Flare-Ups Aren’t Always Predictable

Here’s a big one: I can do something one day and be completely unable to do it the next.

A few months ago, I helped my mom put away dishes. I haven't been able to touch them since. It used to frustrate both me and my loved ones—how could I manage yesterday but not today? But we’ve learned: CRPS doesn’t move in a straight line. Healing isn’t linear, and that’s okay.

4. "You Look Fine" Doesn’t Mean I’m Fine

When you’re in pain all the time, you learn to mask it. Smiling, laughing, engaging—it doesn’t mean I’m pain-free.

Many people with chronic illness don’t openly share their struggles, sometimes because they're shy, afraid of ruining the mood, or unsure how to explain it. Just because you don't see it doesn't mean it isn't there.

5. Not Being Able to Work

When people ask, “What do you do?” it can stir up a lot of painful feelings. Shame. Embarrassment. Grief for dreams you had to give up.

Some people say, “You’re lucky you don't have to work," but living in pain every day doesn’t feel lucky. Accepting that you can't work is its own kind of grief.

6. Weather and Stress Can Make It Worse

Weather can trigger flare-ups—rain, humidity, even a sudden temperature shift. (Thank you, rainy season.)

Stress also worsens CRPS. When my body stays in "alert" mode because of anxiety, it can spark even more pain. Managing my emotional health is just as important as managing my physical symptoms.

7. It's Easy to Feel Isolated

CRPS is rare, and chronic pain can be lonely. People often can’t grasp the depth of the struggle, especially if you're good at hiding it.

If you know someone with CRPS, a little research can go a long way. Learning about how it affects mental health or simply asking thoughtful questions can make someone feel seen.

8. Treatments Help — But There’s No Perfect Solution

I’ve battled CRPS since I was 17, and now I’m 24. I've tried almost everything. Some treatments made things worse. Some did nothing. A few helped—sometimes briefly, sometimes dangerously.

Living with CRPS feels like chasing the wind. One moment a cool compress soothes my wrist; the next, it causes swelling. Medications may ease pain one day, then fail the next. There’s no cure—you just learn to manage the storm.

9. Support Means Everything

Without my mom and my friends, I don’t know how I’d do this. They’ve been my strength when I was weak, my safe place when I was scared.

Sharing pain is vulnerable. But because I opened up, I found a support system I treasure. If you’re reading this, I hope you'll show patience, love, and kindness—you might become someone’s safe space too.

10. I'm Stronger Than I Look

One night, I lost my ability to walk without my walker—which I had left in my bedroom. My mom helped me through a long hallway, up a flight of stairs, and to another hallway.

When we reached the top, exhausted, I decided to crawl. No matter how much she protested, I kept going—inch by inch—until I made it to my room. I made it.

And that wasn’t even the worst experience. I’m stronger than I look. And so are you. Let’s keep going. 💪

On A Personal Note:
Thank you for taking the time to read my story. I hope it brought comfort if you're walking a similar path, or offered insight if you're supporting someone who is.

Chronic illness doesn’t define who we are. Our strength, resilience, and kindness do. 💛

With Warmth and Resilience,
🌹Tala Röse