A Week In My Life With CRPS: The Good, The Bad, The Real

Chronic pain isn’t always obvious. Sometimes it’s quiet, gnawing, and entwined into the simplest moments—like brushing your teeth or making tea. In this post, I want to give you a peek into what a week in my life with CRPS really looks like. Not just the pain, but the resilience, the routines, the breakdowns, and the beauty that still manages to sneak in—sometimes in the quietest ways.

Disclaimer: I’m not a medical professional—just someone navigating life with CRPS and sharing my personal experience. Please consult with your doctor or care team before trying anything new, especially if you’re dealing with chronic illness or pain. What works for me may not work for everyone—and that’s okay. 💛

Section 1: My Morning Routine 🌤️

The first thing I feel when I open my eyes? Red, hot, searing pain. The intensity renders me helpless for a beat—especially on the days when it feels like my bones are being crushed under some invisible weight. I wake up stiff, sore, and almost dizzy from how painful this disease can be.

Getting out of bed is the hardest part. I’m often stuck in some weird position that looks like a chalk outline. Don’t ask me. That’s just how my body does it. So my mom comes in to help me get moving in the morning. While she’s helping me wiggle free, she gently encourages me to do some breathwork. Taking slow, steady, controlled breaths helps soothe any anxiety that comes with the pain—it doesn’t erase it, but it makes it more manageable.

If I have to go somewhere in the morning, it usually takes me an hour or more to get ready, depending on how bad the pain is that day.

I tend to skip breakfast most days—not because I want to, but because I’m often in too much pain to feel hunger. (I don’t recommend this, by the way! If you’re in the same boat, maybe take something small with you to nibble on when you’re able.)

📝 A Mini Time-Stamp Diary:

☀️ 6:30 AM – Wake up. Hands, back, and arms are burning. I sit with the heating pad until I feel ready to move.

🙏 7:00 AM – Mom checks in and helps me if I need assistance.

🙆🏽‍♀️ 7:30 AM – If I can, I do some gentle Pilates. But if it’s too much that day, I listen to my body and skip or save it for later.

🍵 Afterward, I aim to start the day with something nourishing. I’ve been trying the anti-inflammatory diet using an 80/20 approach—it feels realistic and sustainable for me! (I’ll be talking more about this in a future post and how it supports CRPS.)

Section 2: Work, Tasks & Productivity (aka, Pain Management) 💻🍵

With Complex Regional Pain Syndrome (CRPS) being so, well, complex—it’s hard to predict when I’ll be feeling my best. So for me, I have to take each day as it comes. I pace myself instead of pushing. It’s something I constantly have to remind myself to do, because doing too much can set me back days.

For example, if I plan on cleaning my room and bathroom, I break it down into sections. I might clean for 20 minutes (if my body allows), then rest for 15. If the pain is worse, I adjust those times. Giving myself a general framework rather than rigid expectations helps me feel capable without putting pressure on myself to perform perfectly.

Sometimes, I have random bursts of energy and feel like doing everything. On Friday, I started the draft for this blog. On Saturday, I tidied my room. And on Sunday? I crashed. I couldn’t do much of anything. So I rested.

Despite how long I’ve lived with this, I still wrestle with guilt when I can’t complete a task. But I try to remember this one truth:

Rest is productive.

If I push myself while my body’s already crying out for rest, I only prolong the pain and delay healing—and everything gets pushed further back in the end.

If you struggle with this, here’s something that helps me:

If your best friend had a chronic illness and told you they felt guilty for not finishing something, would you tear them down? Of course not. You’d remind them how proud you are, how strong they are. So give yourself that same grace. Be your own best friend. Your body will thank you for it.

Section 3: Nighttime Routines & Rest 💤

To wind down, I usually like to read or journal at night. Or, if it’s been a good day, I might swap morning Pilates for an evening session—with candles lit for extra comfort. If I do Pilates at night, I finish with a warm bath, because I deserve it. And you do too. You survived another day. Give it up for you. 🫶🏽

Even when I feel mentally calm or physically tired, CRPS doesn’t always let my body rest. Some nights, no matter how relaxed I am, sleep just doesn’t come because of the pain.

On those nights, I turn to my coping tools:

Deep breathing

A familiar comfort show or movie

Calming ambient sounds

Having sleep strategies in place ahead of time can be a huge help when the pain flares.

I also find that candles and a little vanilla-scented lotion go a long way in calming my nervous system. Try experimenting with scents, textures, or rituals that bring you peace. Anything that helps you soften into rest is valid.

Closing: A Week in My Life—And Maybe Yours Too 💌

This was just one week in my life, but if you live with chronic illness too, I hope some of these moments resonated. Whether you’re having a flare day or a win, please know: you’re not alone. I see you. I’m with you. And we’re figuring this out together—one soft step at a time.

You deserve grace. You deserve gentleness. And you’re doing an incredible job.

With Warmth & Resilience,

Tala Röse 🌹