Not Out of Hope

An obstacle, NOT a finish line.

Friends,

I have always been a huge advocate for health issues, especially Complex Regional Pain Syndrome, or CRPS.

CRPS is a chronic pain condition that can happen after an injury, surgery, fracture, sprain, or sometimes without a clear cause. It usually starts in one limb, but it is not “just pain.” It can affect temperature, skin color, swelling, sweating, mobility, sensitivity, sleep, mental health, and a person’s ability to function day to day. The pain is often disproportionate to the original injury, which is a very clinical way of saying: the body reacts like the alarm system is broken and screaming long after the original threat should be over.

CRPS used to be more commonly known as Reflex Sympathetic Dystrophy, or RSD. That was the name I knew when I was first diagnosed. Over time, the medical language changed as doctors and researchers came to understand that the condition is more complex than one simple sympathetic nervous system problem. Today, CRPS is generally divided into two major types. CRPS Type I is diagnosed when there is no confirmed major nerve injury, and CRPS Type II is diagnosed when there is a known nerve injury. The symptoms can look very similar, but the distinction matters medically.

There are also different presentations. Some people have what is often called “warm CRPS,” where the affected area may appear red, swollen, hot, and inflamed. Others have “cold CRPS,” which is what I have, where the affected area can become cold, discolored, bluish or pale, and painfully sensitive. CRPS is also associated with autonomic dysfunction, meaning the automatic systems of the body, like blood flow, sweating, temperature regulation, and sometimes heart rate or orthostatic symptoms, can be involved too.

It is also more common in women. Studies have found that females are affected more often than males, with some research estimating women are at three to four times greater risk. And like many chronic illnesses, CRPS rarely travels alone. It can come with a pile-on of comorbidities and complications, including mobility issues, sleep disruption, anxiety, depression, trauma, autonomic symptoms, and the general emotional exhaustion that comes from living in a body that does not always follow the rules.

Back in 2009, I was diagnosed with what was then called Reflex Sympathetic Dystrophy after an injury where I was stepped on. The disease was not well understood then, and it rampaged through my body. It left me severely disabled, terrified, and traumatized.

I do not use the word traumatized lightly.

I have so much PTSD from that period of my life that one of my biggest fears has always been coming out of remission. Not because I am weak. Not because I cannot handle pain. But because I remember exactly what it took from me the first time.

In 2018, when I became pregnant with my daughter, I went into full remission. At the time, I was warned that I would likely come out of remission after six months or so.

But somehow, beautifully, unbelievably, I stayed in remission.

Eight blessed years.

My daughter is a miracle for many reasons, but one of them is that her existence gave me my body back for a while. In those eight years, I was able to go back and finish my college degree. I found the love of my life. I found work that gave me purpose. I built a life I did not think I would get to have.

I went from someone who prayed for death every day to someone who had reasons to live.

And true to my authentic self, I have to be open, honest, and vulnerable.

So here is my announcement and my ask.

Today, though it was already suspected, it was officially confirmed that I am out of remission.

But I need you to hear me when I say this:

I am okay.

I am sad. I am scared. I am annoyed. I am probably going to make some deeply inappropriate jokes about it. But I am okay.

We are 17 years from when this started. That matters. Treatments have improved. Doctors actually know what CRPS is now. Research has moved forward. Patients are more connected. Organizations have built resources that did not exist, or were much harder to find, when I was first diagnosed. We have also been incredibly proactive, even before the official confirmation.

This is not 2009.

I am not 17-year-old me, sitting in a medical system that did not know what to do with me.

I know more now. My doctors know more now. My support system is stronger now. And most importantly, I know that my life is still worth living, even when my body is being a dramatic little gremlin.

So today, I am asking you to do two things.

First, please send prayers, vibes, juju, good energy, or whatever language feels right to you. Send it for healing, for stability, for good care, for ongoing optimism, and for the part of me that is trying very hard not to spiral into the memories of what this was before.

Second, if you have the funds, please consider donating to RSDSA.

RSDSA, the Reflex Sympathetic Dystrophy Syndrome Association, has been supporting people affected by CRPS for over 40 years. Their mission is to provide support, education, and hope to people living with the pain and disability of CRPS while also driving research toward better treatments and a cure.

That organization helped my family and me navigate the challenges of this diagnosis the first time around. Nearly 20 years later, they are still one of the leading organizations for CRPS education, research, advocacy, and patient outreach.

I am out of remission.

But I am not out of options.

I am not out of hope.

And I am absolutely not done fighting.

Sources / Further Reading

For readers who want to learn more about CRPS, I recommend starting with RSDSA, the National Institutes of Health/National Library of Medicine overview, and current clinical summaries on CRPS diagnosis, symptoms, epidemiology, and treatment. RSDSA also offers patient and caregiver resources, support, research updates, and donation opportunities.