Porcupine Chronic Pain

“You have RA, for sure. But I told you this before the blood tests were in,” he announced. My rheumatologist looked slightly triumphant, in the way of a detective who had solved a puzzle that involved months, even years, of mysterious pains and random symptoms.

In many ways, the rheumatoid arthritis diagnosis didn’t shock me, but in others it did. You’d have to be someone also living with chronic pain to fully understand this.

That was four years ago, and I am still experiencing contradictions of living with chronic pain. Learning that I had RA — a form of inflammatory arthritis in which my over-active immune system is attacking my own joints — provided some relief. But there isn’t much that can relieve my pain, which comes in all varieties: aching, stinging, throbbing, nagging, dull, raging.

Ironically, I already knew a lot about rheumatoid arthritis (and about pain generally), because I am a researcher who studies chronic pain as the Associate Director of Patient-Centered Research at the Global Healthy Living Foundation.

I work with clinicians, other researchers, and patients to understand chronic pain conditions and how they affect the everyday lives of those who live with them. The ultimate goal, and my own commitment, is to help improve the lives of those who live with chronic conditions.

The Irony of Being a Pain Researcher with Rheumatoid Arthritis

As a researcher who works on chronic pain-related projects every day, I am still sometimes at odds with myself because I’m also a patient living with pain due to my RA.

As far as pain management basics go, I know what’s important:

  • Take your meds regularly (don’t skip them)
  • Avoid your pain triggers (stress, specific foods, certain activities)
  • Don’t forget about your mental health

But once I became an RA patient, I quickly realized these “rules” are easier to read about than to live. Logic always makes sense when it isn’t supposed to apply to you, right?

The truth is that there are times I want to take a break from my meds. Stress is around us pretty much all the time (thank you, COVID-19, for making this worse). Some of the foods I’ve learned are my triggers are suddenly the ones I crave.

What we chronic patients learn to be, in the end, are great self-negotiators.

I can broker the best deal because I understand high-value trade-offs: the slice of a thin-crust New York-style pizza versus feeling pain afterward, walking around a city when on vacation versus a having a flare, skipping doses of meds for a break from the nausea versus risking enraging the RA always lurking within me.

Using Science to Change My Perspective on Pain

With an insider’s view into both worlds — researcher and patient — I studied chronic pain in all its shapes and forms, then I proceeded to learn more about it from the best scientific and medical minds around the country.

But I was still struggling with how to marry and meld what I was learning from research studies and medical conferences with what I was experiencing firsthand as a rheumatoid arthritis patient.

Sometimes an opportunity comes around just to give you the reality check you need. That is exactly what happened when my research team received a grant award from the Patient-Centered Outcomes Research Institute (PCORI) to share what science was teaching us about chronic pain and how to manage it using different approaches.

I thought to myself, “Well, I know this stuff. I can share everything that I know already.”

But after having spent nearly a year taking this project from inception to launch, it turns out — and here’s my reality-check moment — that what I thought I knew wasn’t all that much, relative to the larger body of research out there.

More importantly, the latest science on managing chronic pain was so fascinating that I felt compelled and actually excited to share it with others in our patient community.

I encourage you to sign up for our online package Pain Explained, which provides information on what causes pain to become chronic and how to treat chronic pain using science-based strategies.

You can watch an informative webinar and sign up for a six-part series that dives deeper into chronic pain management strategies. Learn more and sign up here.

To give you a sneak peek, here are six things I learned from working on this project that have helped me think about my own personal pain differently — and cope with it better.

1. ‘Gates’ in your spinal cord can explain why some people are more sensitive to pain than others.

Did you know that we have “gates” in our spinal cord that allow messages to enter and exit — and the messages you allow in and out can impact how you experience pain? Originating in the early 1960s by researchers Ronald Melzack and Patrick Wall, this Gate Theory tells us that there are nerve gates that control the degree of the pain signals that reach your brain. Even more interesting, you can learn to manipulate how much you open or shut them, so that ultimately you can control and regulate (to some extent) what can enter and what can’t.

We now know through research that if we let certain things enter these gates, it might help  dampen the experience of pain. And on the flip side, there are other things that can amplify and worsen pain. Interested in learning more about some things that can open and shut these gates? Read more about it in our pain package.

2. Your pain vocabulary matters.

Ever wondered why we use the words we do to describe pain? I often feel like I’m walking on a bed of pebbles when my feet hurt because of my RA. That’s exactly what I say to my doctor — and the funny thing is — he understands the language I use to describe my pain.

The language you use to describe your pain can provide key information about the reasons behind your pain. Shooting, burning, throbbing, stinging, dull, and nagging — these aren’t just random words. They may help shed light on what physiological factors are behind the pain — say, whether your pain is mechanical or neurological in nature.

When your doctor asks you to describe your pain, your specific word choices may tell your doctor something important. Different sensations may indicate causes for your pain.

That is why it is important to be able to understand, and to describe accurately the sensation of the pain and where you are feeling the pain. This can help you and your care team identify the reason for your pain. Not sure what is causing your pain in a particular body area? Take our PainSpot quiz to learn about possible reasons for your pain.

3. A broken ‘burglar alarm’ in your brain may be a cause of your pain.

You know how sometimes your home’s burglar alarm goes off even when there isn’t a burglar in the house? Or maybe the “burglar” is actually your Golden Retriever tripping off a motion sensor?

Well, that’s exactly what can sometimes happen with pain in your body. The brain and spinal cord receive pain signals and sometimes things go wrong in how these signals are sent and received, which makes us more sensitive to pain signals.

If you’ve ever felt pain from something seemingly benign, like a blanket brushing up against your foot, you may have experienced this “faulty alarm” kind of pain. This phenomenon may also explain why we sometimes feel pain even after an injury is healed. This is related to something called central sensitization, which is critical for everyone with chronic pain to understand.\

4. Playing a violin has a lot in common with treating chronic pain.

If you’ve ever played a string instrument like a violin or a guitar, you know that different strings make different sounds and combining the right notes makes for a good song (for most part). But if you play only the same string, there isn’t any song — just noise.

It’s the same with treating chronic pain. Chronic pain should be treated using multiple approaches (or many strings, in the case of our orchestra metaphor).

These include medication (per your doctor’s advice) and non-medication approaches, such as sleep hygiene, exercise, healthy diet, and stress-reduction techniques. We’ve all heard this, but there is an astounding amount of scientific research to support it. Chronic pain is emotional and physical. Current research shows that a combination of treatment approaches is the most beneficial when managing chronic pain.

I’m trying this myself and it’s difficult because it means lifestyle changes, which are not always easy to maintain. But wise people say determination is the first step to success, right?

5. Dangerous false beliefs about chronic pain continue to shape how pain is mistreated in health care.

This shook me to my soul. Did you know that medical science actually once believed —mistakenly — that Black people could tolerate more surgical operations and procedures than white people, or that Black people had thicker skin or less sensitive nerve endings, causing them to feel pain less? Experiments were actually conducted in the name of science to test whether Black people felt less pain during procedures. Pain tolerance was tested by amputating limbs of Black slaves.

Hundreds of years later, studies continue to show that Black people are treated inadequately for pain, which may result from these beliefs that have impacted the health care system consciously and subconsciously.

Racial disparities in the assessment of pain and subsequent treatment are real. This is dangerous and it must stop.

6. Advocate, advocate, advocate.

One thing every good researcher will tell you is that there is always more to learn. It’s like mountaineers: They’re never satisfied when they reach the summit of one mountain. They’re always looking for the next climb, for the alternate route, for the next challenge.

Unless we advocate for what we, as patients, want to learn more about — whether that’s complimentary therapies like CBD or yoga for arthritis or about the benefits of cognitive behavior therapy (CBT) on pain management, we won’t know what we don’t know yet. And if we don’t know enough about something, then we might not use it to our benefit.

We’re all in this together and for each other.

One easy way to be part of the same chorus — so we can together advance research and our understanding of chronic pain together — is to join the ArthritisPower tracking tool and research registry.

The thing about chronic pain conditions like RA and others is that there are some things doctors just cannot see on a blood or imaging test. There isn’t any test for measuring fatigue or even pain. But there is something as powerful, if not more: our voices — the patient voice.

We have to insist on being heard. The louder our voice, the further our reach. We can be part of the solution, so that together with blood tests and biomarkers and information that comes directly from our lived experience, doctors and researchers can begin to piece together the puzzle to understand the bigger picture of our pain.

Learn more about ArthritisPower and sign up here.