This is the first installment of a three-part series leading up to the exciting re-launch of the U.S. Pain Foundation Volunteer Network. You can read the second part here.

Imagine driving with the top down on a warm, summer day with your favorite tunes filling the air around you. The sunlight filters through the trees and warms your shoulders, and there’s absolutely no traffic in sight. All is right in your world.

Suddenly, you round the bend and find yourself in a long, dark, twisty, unfamiliar tunnel. If you’re like me, you might get a slight sense of anxiety in the pit of your stomach when you can’t see the light at the other end—but you may tell yourself you’re just being silly. But what if you weren’t just being silly? What if you were driving through that tunnel for years and never coming out the other side? That happened to me … metaphorically, of course.

But let me back up a bit. In order to appreciate how I found the light at the end of that tunnel, it’s important to understand a bit about my pain journey, and more importantly, how my story might be a roadmap to finding your own light.

Life Takes a Sharp Turn

Twenty-four years ago, I was a fourth grade school teacher. I absolutely loved my job, and other than someday becoming a mom, it’s all I ever really wanted to do. I was healthy, active, and had lots of friends. All was right in my world … that is, until September 21, 2000, a date that will forever be etched in my memory.

The custodian had mopped the floor in front of my classroom, and he did not put up any orange cones or “wet floor” warning signs. I walked out of my classroom, slipped, and fell—landing first on my right knee, then twisting and ending up on my back. Despite putting ice on my knee, I was still in a lot of pain. I didn’t go to the doctor, though, because it was almost time for Back-to-School Night, and I didn’t want to miss it.

The next day, I went to school, but the pain continued to worsen, and I was having trouble walking around the classroom. By the end of the day, I ended up in a worker’s compensation orthopedic doctor’s office. 

When I left work that day, I had no idea it was the last time I would ever step foot in that school, and the last time I would ever be an elementary school teacher. It was also the last time I would be able to drive for the next 13 years. I found myself at the entrance to that unfamiliar, dark tunnel. 

Stalling Out

I was eventually diagnosed with a torn meniscus, sprained hip, and two torn discs in my lumbar spine. The next couple of months were frightening as my pain continued to increase.  I developed swelling in my knee, leg, and foot, and I was having trouble tolerating the sheets touching my knee when I was in bed due to hypersensitivity to touch.

By the time I had my follow-up appointment with an orthopedic surgeon, I was having tremendous difficulty walking and moving my knee. When the doctor came in to examine me, he was shocked at my decline, and he asked a colleague to examine me as well. They both suspected that I had complex regional pain syndrome, or CRPS (formerly known as reflex sympathetic dystrophy or RSD), which they said in passing as they headed out the door.

A few days before my 30th birthday, I was diagnosed with CRPS—a neurological syndrome that causes severe burning pain, pathological changes to the bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch. It is one of the most painful and rare conditions known to man, rated 42 out of 50 on the McGill Pain Index. This is higher than childbirth, amputation of a finger or toe, and non-terminal cancer.

Over the next several years, I tried dozens of treatments, some considered experimental, to deal with my escalating pain and disability. None of them helped, or if they did, the relief was short-lived. Some of the procedures were excruciatingly painful, and recovery would take days or sometimes weeks.

I was also prescribed countless medications. At one time, my family counted that I was taking 39 pills a day, and taking them 11 times a day around the clock.

I developed extreme fatigue and short-term memory loss. My personality basically disappeared because I was so medicated. I would often fall asleep on my laptop, or with food in my mouth, or even mid-sentence. I even fell out of bed a couple of times. I began to have migraine attacks, nausea, dizziness, and gained more than 100 pounds. 

A Gradual Acceleration

Four years after my fall, I was living in my childhood bedroom at my parents’ house, rarely leaving my bed, and I couldn’t get around without a wheelchair the majority of the time. I’d lost my teaching career, I was unable to drive, and most of the time, I could not tolerate wearing pants or shoes because of the hypersensitivity caused by CRPS. I began to lose hope, and I definitely felt I would never find my way out of that dark and lonely tunnel.

About five years into my pain journey, I found myself at a crossroads. I could either continue on the path I was on, or I could make the decision to participate in a functional restoration program (FRP) suggested by my new doctor. 

After an evaluation with a team of doctors, they suggested I switch from the extremely high doses of opiates I was taking to a much less sedating medication in order to fully participate in the FRP.  I agreed, but part of my decision was also based on the fact that I was having level 10 pain despite so much medication.  I learned that I was probably dealing with opioid-induced hyperalgesia, a side effect of opioid use that causes increased sensitivity to painful stimuli. I spent several weeks in an in-patient detox to transition to the new medication.

The FRP offered a comprehensive, interdisciplinary pain management approach. I participated in physical therapy, occupational therapy, wellness classes where we learned Tai Chi and meditation, and doctor’s lectures on topics like nutrition and medication. There was also art therapy and group psychotherapy, where we discussed sleep hygiene, communication, and more.

Over the course of the eight-week program, I continued to make progress—much of which continued for months and, in some respects, years after. I improved my balance and learned how to walk and climb stairs again. I was also able to decrease the medications I was taking for CRPS down to two.

I finally felt like I could see a slight glimmer of light ahead. Maybe I would find my way out of the tunnel. I was able to do some limited traveling with a lot of pre-planning and modifications, have a bit of a social life again, and a few years after I graduated from the program, I was able to move into my own apartment. Most exciting was when I was finally able to drive again with a left-foot accelerator when my pain levels were not too high. 

The Light at the End of the Tunnel

Of course, there have been many, many challenges since then, too. I went through CRPS flare-ups, and the disease spread to other body parts. I developed comorbid pain conditions like migraine, vestibular migraine, and fibromyalgia. Over the years, I experienced frequent acute injuries, some that have turned chronic.

But I continued making use of the free services made available to graduates of the FRP long after I completed the program. I consistently used the gym equipment and was involved in every class or event the clinic offered to patients—art therapy support groups, wellness classes, an open art studio, crochet group, Zumba for Pain, patient art shows, and holiday boutiques.

After I began speaking on the graduate panel for the FRP, as well as one-on-one with patients living with CRPS, I started to find my voice again. I became a volunteer moderator of an RSD/CRPS Facebook group and started my own in-person support group. I started feeling like I might have a purpose again, and that light was shining a bit brighter at the end of the tunnel. 

As it so often does, Fate stepped in and guided me out of the dark tunnel by setting me on the path to creating new hopes and dreams. Fate was actually named Nicole Hemmenway, now the CEO of the U.S. Pain Foundation—which up until that day, I didn’t know existed. Nicole visited an art therapy session I attended, looking for people to feature in U.S. Pain’s magazine, and I was selected. I was profiled in the 2015 issue of the INvisible Project, and my new path was set.

The INvisible Project is an online and print magazine that highlights the experiences of people living with pain. As a result of that opportunity, I learned how important it was to share my story—not only to help others living with pain, but also to educate health care providers and effect change through laws related to pain management.

I signed up as a volunteer with U.S. Pain, and I immediately became very involved in Pain Awareness Month. I helped raise awareness with the Beautify in Blue and Light Up the Landmarks campaigns, and I worked with other volunteers to get Pain Awareness Month proclamations adopted in many states and cities. I also spoke at city council meetings all across the San Francisco Bay Area. I learned how important it was to raise awareness about pain and the need for better research and better treatments, as well as equitable access to those treatments. As bad as my story was, I was learning how much worse it was for so many other people across the country, and I wanted to help. 

I participated in U.S. Pain’s Advocacy Training Series and learned how to use my voice, and eventually I started helping others find their voice, too. I became the Patient Engagement Lead at U.S. Pain and a peer support group leader, which enables me to connect with people all across the country, and occasionally someone from another country as well.

The U.S. Pain Foundation was like my compass, guiding me toward the bright sunlight at the end of the dark tunnel I had been in for years. The organization helped lead me to the fulfillment of volunteer work, helping me take back some of my power that had been lost. My life is by no means easy, and I still live with debilitating pain, but my life is so much better now that I’ve found a way to still help others despite my challenges. Knowing that I can do so much to be a light for others, oftentimes from my bed, has made a world of difference on my chronic pain journey.

—Michele Rice, Patient Engagement Lead, U.S. Pain Foundation