By Heather Grace

My journey into what would become debilitating pain began at age 19, when my neck was injured in a head-on collision caused by a drunk driver. Being a backseat passenger in an older car meant there were no headrests.

I healed as best I could after the accident with chiropractic care and exercise. I was young and told myself I’d be fine, but sensed I wasn’t quite the same as before.

Nearly a decade of work in the IT field worsened the severity of my injury, due to faulty ergonomics. Between the severe pain and the horrors of the workers compensation system, it began to feel like I was in free fall. At my first visit with a prominent pain management specialist, I was told, “Normal is out the window for you.”

It was the worst thing I’d ever heard, so I began sobbing. What he said wasn’t actually cruel, it was honest. He could see that my body was broken by work comp care that included two botched neurosurgeries and one spinal discectomy-fusion surgery that came far too late to be a good thing. 

I was left with intractable pain and nerve damage, which would be diagnosed as Complex Regional Pain Syndrome (CRPS) Type II. The CRPS is not regional at all, but spread to the whole body, thanks to the impact on my spinal column and brain.

I would later also learn that I was born with Ehlers-Danlos Syndrome, a progressive connective tissue disease.

Intractable Pain Syndrome (IPS) isn’t well understood in mainstream medicine because it’s not very common. In fact, even after working in Continuing Medical Education for 10 years, I’d never heard of IPS until I was diagnosed with it. I didn’t know that it was possible to be in severe unceasing pain.

People with IPS experience major health problems throughout their lives because of the physical and psychological toll that pain takes on the brain and body. Treatment for this complex and disabling condition must be taken seriously and done correctly.

A New Future

After all this was explained to me by my doctor, I realized that to move forward with my life, I had to stop pinning my hopes on returning someday to “normal.” I had to grieve the loss of my former life. Once I did, a door was opened to a meaningful future for me.

Thanks to amazing treatment with a physician who also helped me focus on the future, I’m living again in a way I didn’t think was possible when I first sat down with my doctor in 2006. He found the right treatments for me, which included opioid pain medication.  

I’ve reduced my medication dose slowly over the years. I’m now taking less than one sixth the pain medication I started with. That’s because I’ve experienced neurogenesis, a form of healing in my nervous system.

It is possible for people like me to heal, albeit very slowly over time when they get the care that they need. Despite the severity of my conditions, I’m doing well. Contrary to popular opinion, patients who get the proper dose of pain meds don’t always require more and more medication. While some patients’ dosages stay the same, some of us are able to lower our doses when our health improves.  

I’ve come so far. In 2004, when I left the job I loved awaiting two major surgeries, I thought I’d never work again. But I was able to obtain a full-time job (with benefits!) in 2020. It required a major effort, but I got here because I had a good foundation of long-term effective pain management, which lessened the impact of pain on my overall wellness.

Opioid medication does not define my care, nor my life. Pain meds are merely a tool I’ve used to get well. Every patient should have access to individualized pain care with the treatment options that best work for them. It’s crucial for patients if they’re ever going to see their health improve.

I won’t lie, it’s been a struggle and I have had my share of setbacks too. Yet I know without question that pain medication was required in my case. It made a serious difference in my overall health and paved the way to my future too.  

Effective pain management for someone with IPS is as vital as care for any other serious illness. You’d never tell a diabetic that an arbitrary maximum dose of insulin was all they were allowed to have. Why are pain patients any different? None of us asked for the pain, nor do we like having to take a prescription drug that’s so socially maligned. These judgments exist nowhere outside of pain management. Why are people in pain treated so differently and with such suspicion?  

The fact is, when the CDC’s opioid prescribing guideline was released in 2016, the consequences were far-reaching and dire. Countless patients have needlessly suffered and died because they lost access to opioids or were tapered, based on the guideline’s recommendations. Many of those deaths have been due to the pain finally overtaking the body. Other patients have chosen to end their pain via suicide. Imagine being so ill that you were forced to make such a choice!  

Without access to effective individualized treatment by physicians whose options aren’t stifled by a system that doesn’t understand pain, many more people with serious diagnoses will develop intractable pain.

Those outside the treatment setting have no business undermining patients’ pain care protocols. They simply don’t have the knowledge to be involved on that level. That goes for the CDC, DEA, state medical boards and insurance companies — along with anyone else who gets in the way of pain patients having effective care. 

Sadly, I know it’s the workers compensation system that led to the severity of my illness. I got an extensive education on how an overburdened system not designed for people with serious healthcare needs can result in disability.  

Please don’t jeopardize the future of an entire branch of medicine any further. There are human lives on the line. Everyone knows someone living with chronic pain. Make the changes needed to continue treating people like me — people whose lives don’t have to end because they have a serious injury or illness. It’s crucial to roll back the damage done by the CDC guideline before we all lose access to pain management forever.

Heather Grace is a patient, advocate and member of For Grace’s Board of Governors. She’s worked for health-focused nonprofits most of her career & developed Continuing Medical Education (CME) for nearly a decade. Heather lives with Complex Regional Pain Syndrome II and the genetic condition Ehlers-Danlos Syndrome. Heather has a website on pain issues called Intractable Pain Journal.