Color the World Orange for CRPS Awareness and Better Access to Care

Today is Color the World Orange Day, a day dedicated to raising awareness of Complex Regional Pain Syndrome, or CRPS. As someone living with CRPS and the owner of Light Therapy Resource, I am grateful that this day exists. Seeing people wear orange, share their stories, and recognize a condition that has changed so many lives means something to me.

Here in Ventura County, I am especially thankful to Supervisor Jeff Gorell and his team for supporting the proclamation recognizing this day. But a post I read from another person living with CRPS hit close to home. It raised a question I think we need to keep asking:

What happens after the orange lights turn off?

Awareness needs to reach the people treating us

For someone who has never heard of CRPS, learning its name is a start. For a healthcare professional responsible for treating someone with it, we need that understanding to go much further.

CRPS can involve severe pain, extreme sensitivity to touch, swelling, changes in skin temperature and color, and difficulty moving the affected area. It can affect a person's ability to work, sleep, walk, and manage everyday life.

When you are already hurting, having to explain your diagnosis and defend what you are experiencing adds another layer of exhaustion. I hear from people who feel dismissed or who struggle to find a medical professional familiar with their condition. The post that prompted me to write this described exactly that frustration: seeking help while also feeling responsible for educating the person providing it.

There are knowledgeable, compassionate medical professionals working with CRPS patients. I appreciate them, and we need more of them.

I want CRPS awareness to reach emergency departments, urgent care centers, primary care offices, and the people training our next generation of healthcare professionals. Recognizing the name should be followed by knowing how to assess the patient, respond respectfully, and find appropriate guidance when a case is unfamiliar.

That also means taking new symptoms seriously. Having CRPS does not mean every new problem should automatically be attributed to it.

I know what it costs to look for relief

My perspective comes from living on both sides of this.

Before I was a scrambler therapy practitioner, I was a person trying to get my life back. My own search for relief cost approximately $45,000. Scrambler therapy was an important part of my progress from using crutches to walking again, but my experience was not a quick, simple ten-session story.

I also know how much illness can disrupt your ability to earn money at the very moment you need more of it. Appointments, travel, treatment costs, and time away from work can become overwhelming. Then there is everything waiting for you at home. Bills do not pause because you are in a flare. Parenting does not pause. Neither does the need to eat or keep a roof over your head.

When we talk about access to treatment, those realities have to be part of the conversation.

Finding something helpful should not create another financial crisis

One of the most frustrating parts of this journey is that a therapy can make a meaningful difference for an individual and still be financially out of reach.

Scrambler therapy is one example. It helped me and it is a therapy I now administer. Yet coverage remains a barrier, with some insurers classifying it as investigational and excluding it from coverage. Benefits depend on the specific plan and circumstances.

Other approaches patients explore may also involve out-of-pocket costs. A person may find something that helps them function, then face the question of how long they can afford to continue.

I am careful about the difference between personal experience and scientific evidence. My results do not guarantee someone else's results. CRPS treatment research still has important gaps and emerging therapies need careful study.

But that is a reason to invest in better research and meaningful pathways to access. Patients need studies that examine sustained relief, daily function, safety, and quality of life, alongside a way to turn that evidence into care they can afford.

It is hard to hear that more research is needed when you need help getting through today. Both needs deserve attention.

We need people willing to work together

At Light Therapy Resource, my experience with CRPS influences how I listen and how I approach my work. I know how much hope can be attached to an appointment and how discouraging it can feel when progress does not come easily.

I also know that no single provider or therapy has every answer.

I want more collaboration between conventional medicine, rehabilitation professionals, researchers, and providers exploring complementary approaches. That collaboration needs honest conversations about benefits, limitations, risks, and what we still do not know.

Patients deserve clear information without promises of a cure. They deserve help evaluating options without being made to feel foolish for continuing to look for relief.

Most of all, they deserve to be included in the conversation. What someone can do after treatment matters. So does whether the improvement lasts, what treatment costs, and what it takes to keep going.

What I hope today leads to

I hope someone learns about CRPS today who had never heard of it before.

I also hope a healthcare professional seeks out more education. I hope a researcher sees a question worth pursuing. I hope an insurer considers how coverage decisions affect a patient's ability to function and stay employed.

And I hope someone living with CRPS feels a little less alone.

We can wear orange and still ask for more. We can be thankful for recognition and still be frustrated by the gaps in care.

People living with CRPS should not have to become experts in their own condition just to be heard or exhaust their savings trying to find relief.

Today, I am wearing orange as a patient, a provider, and someone who knows how much work remains. Tomorrow, we still need informed care, better research, and treatment people can actually access.