My Body Is Betraying Me (living with CRPS)

Written by Kiana Wooten for Ravoke.com

What do you do when your body starts to betray you?

This human vessel that you have grown into—you’ve watched it change, carry pregnancies, and develop into an adult. You are the first person to know when something is wrong; it’s naturally built for you to feel a cold coming on or a pulled muscle. But what happens when your body starts defying science? When the changes cannot be explained, even by medical professionals?

A Diagnosis That Changed Everything

My story begins in 2019 when I was diagnosed with invasive ductal carcinoma (breast cancer) at 34 years old. Before I could process the diagnosis, my oncology team offered treatment options. I underwent a bilateral mastectomy followed by chemotherapy and hormone therapy for my ER+/PR+/Her2- cancer.

At the time, my surgeon recommended implants. They placed tissue expanders to stretch the skin for the final implants—and that is when my nightmare began.

When Recovery Turns Into Crisis

After two months, I woke up in immense pain with blood leaking from my right chest cavity. My body was rejecting the expander, and I had developed sepsis. After clearing the infection and eventually receiving implants, I hoped to return to my old life.

However, a few months later, the fever and redness returned. I was septic again and required another emergency surgery.

Despite being pushed to try different brands or a DIEP flap, I refused further reconstruction and chose to stay flat—an option that wasn’t initially offered to me.

The Symptoms No One Could Explain

In late 2024, the swelling returned. Despite 15 doctor visits, normal ultrasounds, and normal MRIs, the pain intensified and moved down my arm. My hand began changing colors and losing strength.

Finally, during a visit to my breast surgeon, my arm turned ice cold and blue. I was rushed to the ER, where I saw specialists in cardiology, vascular health, and pain management.

No one had answers.

Understanding CRPS: A Rare and Painful Condition

Finally, my oncologist provided a diagnosis: CRPS (Complex Regional Pain Syndrome), also known as RSD. It is a rare neurological disorder often triggered by surgery or injury. Because of my multiple surgeries and extensive nerve damage, this illness began to take control of my life.

Since this was a new illness I had never heard of, I decided to do research. What I found terrified me.

There is no cure.

It’s often referred to as “the suicide disease” because of the intensity of the pain. The pain can start in one limb and spread to another. It is considered one of the most painful conditions known to man. The fire-like, blistering heat you feel—and then the extreme cold ripping through your body—is indescribable.

No matter what I chose to do treatment-wise, it would only be temporary relief.

How would I go about my everyday routine?

The intrusive thoughts consumed me every day.

The Struggle to Find Relief

While looking at treatment options, I became frustrated and enraged. I went to so many specialists trying to find relief.

One pain management doctor wouldn’t prescribe medication. A vascular doctor told me to try physical therapy—which I did—but it only helped with mobility, not the pain itself.

I looked into ketamine infusion therapy. Most doctors charge anywhere from $500–$700 per session. I couldn’t afford that, and it’s not covered by many insurance providers.

Then an orthopedic doctor suggested a spinal cord stimulator, which I refused. I learned from implants that my body doesn’t respond well to anything foreign.

I felt hopeless. I felt like I was going to snap at any moment. I desperately needed help—and nothing seemed to work.

The Emotional Toll of Living with CRPS

The one thing I can say is that my family has always been by my side, even though I often feel like a burden. This brought me right back to when I was diagnosed with cancer.

There are times when I just sit in my bed and cry. Even the touch of someone trying to comfort me can make me feel sick. There were times when I couldn’t even feed myself.

I feel like a fraction of the woman I used to be.

I feel empty.
I feel tired.
I feel frustrated.
Most of all, I feel lost.

No one talks about how suffocating this is. Even when you are surrounded by people who love and care about you, they cannot fully understand what you are going through.

Friends fade away. Some people say I am exaggerating or seeking attention.

This is physical and mental anguish that no one can truly understand unless they have lived it.

Trying to find even a glimpse of happiness each day is exhausting.

But the one thing I haven’t lost is hope.

Finding Community and Strength

I remember going on Facebook and typing in CRPS. Since this syndrome was pulling me into a dark place, I knew I needed support. I needed to connect with others who understood.

I found groups and began scrolling, learning about others’ experiences and coping mechanisms.

Then I came across a documentary clip: Trial By Fire.

That one documentary changed my life.

The Documentary That Sparked My Fight

Trial By Fire follows the lives of people living with CRPS. It was captivating—but also heartbreaking.

The producer, Charles Mattocks, created it because his mother, Constance Marley, suffered from full-body CRPS. Cameras followed her treatment journey for two weeks.

I was hopeful—but the treatments didn’t help her.

Once again, I felt broken.

As I continued watching, my anxiety grew. These were real people going from doctor to doctor, not being believed, facing financial ruin just to try to survive.

For the first time since my diagnosis, I felt seen.

Finally—people who understood.

But when I learned that one of the young women had passed away, I broke down.

And in that moment, I knew what I had to do.

Fight.

I had done it before—and I would do it again.

Not just for me, but for everyone who has suffered from this disease.

Learning to Live Again, One Step at a Time

I started physical therapy. The process has been slow and painful.

Strengthening my arm and wrist.
Desensitization therapy—the worst part.

Even the lightest touch, like a feather, makes me want to scream. But I keep going.

I am often sore for days, but I continue exercises at home between sessions.

I also began ganglion nerve block injections in my neck. I’ve only had one so far, so it’s too early to know how effective it will be. I need more time—and more treatments.

I am still exploring other options, hoping to find something that provides relief so I can continue doing the things I love.

Redefining Life with Chronic Pain

I had to go on temporary disability for three months. As a chef, it became nearly impossible to do my job—or even basic daily tasks like showering or getting dressed—without pain and tears.

The pain can be overwhelming. Even the smallest tasks feel impossible some days.

I am learning to take baby steps.

To celebrate small wins.

This is my life now—and I am taking it one day at a time.

Kiana is also featured in the follow up film Trail by Fire 2 coming soon

---

CRPS FAQ

What is CRPS (Complex Regional Pain Syndrome)?

CRPS is a chronic neurological condition that typically affects a limb after injury or surgery. It causes severe, persistent pain that is often disproportionate to the original injury.

What are common symptoms of CRPS?

Symptoms may include:

• Burning or throbbing pain
• Sensitivity to touch or cold
• Swelling in the affected area
• Changes in skin temperature and color
• Decreased mobility

What causes CRPS?

CRPS is often triggered by trauma such as surgery, injury, or nerve damage. The exact cause is not fully understood but involves abnormal responses of the nervous system.

Is there a cure for CRPS?

There is currently no cure for CRPS. Treatments focus on managing symptoms and improving quality of life.

What treatments are available for CRPS?

Treatment options may include:

• Physical therapy
• Pain management medications
• Nerve blocks
• Ketamine infusions
• Spinal cord stimulation

Can CRPS spread to other parts of the body?

Yes, in some cases CRPS can spread from the initial affected area to other limbs or areas of the body.

If you are looking for a support group visit: http://fighttheflame.org