I got 99 Problems and My Nervous System is About 90 of Them

Eighteen months ago, I finally found a doctor who took my concerns about chronic pain seriously without trying to throw opioids at me to mask symptoms or assuming I was a pill seeker. Since my late teens, I have pushed through chronic back pain. I had bought every device, done all the stretches, attended countless hours of physical therapy, tried every topical cream & muscle relaxer. I have missed out on fun activities, made excuses for why I couldn’t participate in things, depended on my kids to help with simple tasks, cried myself to sleep seeking relief. I had created a system of heat, ice, stretching, chiropractor, massage therapy, acupuncture, dry needling, cupping…constantly managing my symptoms in an effort to live a “normal” life without pain that interfered with my daily tasks. I was in physical therapy AGAIN when I burst into tears about how tired I was. Tired of hurting. Tired of trying things that don’t work. Tired of having doctors tell me nothing was wrong or trying to write me a prescription. Tired of having to say no to my kids. Tired of not being able to do everyday things without pain and exhaustion.

My physical therapist saw me that day. Really saw me. I had been seeing her consistently for months, doing the work, making small bits of progress that never seemed to add up to relief. She recommended me to a pain specialist, assuring me that this provider wasn’t going to throw meds at me and push me out the door. I broke down at that appointment too. Explained all of the ways in which I had make allowances for my pain.

“How often do you hurt?” Is that a rhetorical question? I don’t remember a time I haven’t been in pain. Aside from a intense, deep tissue massage that helps me sleep that night and I’m back to square one the next morning?  If I’m in dire straits, I have reached the point of no return and asked my PCP for a short term prescription pain reliever. A few hours of relief that may stretch to a few weeks and then, back to where I was.

 “What would you rate your pain?” I don’t know how to answer that. My pain tolerance is off the charts. I had 2 emergency C-sections and refused pain relief more than Tylenol because it meant I couldn’t see my babies. And I was FINE. Did I hurt? Of course, but it was manageable.

“How could that be? You had major surgery.” I’m aware. A couple of hours after delivery, the nurse came in to change out my pain pump that was available with morphine for pain management. She assumed it was broken, it hadn’t been used more than one time upon transferring rooms. It wasn’t. I just wasn’t pushing the button. It was manageable, I told her. FOUR HOURS AFTER MAJOR ABDOMINAL SURGERY. I had babies to see and hold in the NICU.

For a long time, I tricked myself into thinking it was a superpower of sorts, my ability to push through, break down the walls and keep going no matter how I was feeling. Until I wasn’t.

And this doctor was the first person to really listen to me say, “I want to get better, I don’t expect the pain to disappear. But I don’t want you to just throw meds at me. I want to get to the root of the issue and treat THAT.”

She is the first doctor to do some testing on my nervous system responses, seemingly insignificant tasks that I can’t imagine mean anything. Pull against me. Push against me. Hold your hands out. Put your fingers together. Pull them apart. Stand on one foot. Stand on the other. I’ll be honest, I wasn’t exactly buying in when I ask, “what in the heck is this going to tell you about anything?”

She smiles. “Hold out your fingers for me.” And she begins to flip the ends of my fingers repeatedly. This finger, then that one. Over and over again. And then she explains, “your nervous system appears to be dysregulated, and we need to figure out why.”

So, we did the scans, the MRIs, etc. Yes, there are some structural issues, small ones. Nothing to explain the level of pain you are experiencing, she tells me. How can that be?, I ask.

This isn’t in my head. I know it’s not. I began crying again, thinking this is where she tells me that there’s not much they can do other than write a script that will turn me into a zombie on my couch (I’m very sensitive to medications. An allergy pill can knock me out for a good 4-6 hour nap.)

She tells me something that I had never heard in dozens of appointments with dozens of specialists throughout the last 30 years. “Your nervous system is dysregulated.” She pulls up a graph to explain sympathetic and parasympathetic parts of the nervous system.

“You’ve described yourself as hyper vigilant. Constantly in flight or fight mode. That’s your sympathetic nervous system in overdrive.” Fair. I’ve talked about this with my therapist many times throughout the years.

“Your parasympathetic system is what takes over in times of rest. It helps slow the body down. It helps regulate the body’s responses so that it can rest, relax and repair itself. Its primary function is to maintain long term health and conserve energy.” Huh. I don’t know that I am using that much.

“And when these two systems are working well in tandem, it’s a beautiful thing. When they’re not, the sympathetic system will shut down the parasympathetic system so that it can conserve all the energy it needs to stay in that fight or flight mode. It’s shutting down the things it doesn’t think are necessary when you are in survival mode.” But what if you are always in survival mode, then what?

“And that’s where we begin this work. We begin to work on healing your nervous system. Helping your body get out of survival mode. Because I think your body is manifesting this dysregulation with pain. Not entirely, of course. But if we can get your nervous system healing, we can make great gains in your back pain.”

If any of this resonates with you and you are wondering what a dysregulated nervous system is, here’s some helpful information that should be a precursor to talking with your doctor.

What causes a dysregulated nervous system?

Some factors include:

Chronic stress

Trauma

Adverse Childhood Experiences

Overstimulation

Lifestyle Factors

And how may you know whether your nervous system may be dysregulated?

 Some signs include:

You’re constantly overwhelmed or on edge

You’re highly sensitive to stimuli- smells, sounds, etc.

You’re irritable, angry, highly reactive

You’re chronically tired and experience sleep difficulties

You experience chronic pain

You struggle with attention and focus, impeding your daily life

You have GI issues- think IBS, changing appetite patterns or cravings

It turns out that the body does, indeed, keep the score.

And so, for the last 18 months, I have been on a journey to heal. Over the next few weeks, I will share some of the ways that I have been working to heal my own nervous system. If you read this far and you think your nervous system is dysregulated, maybe you can find some tangible ways to do some of your own work too.  I’d love to hear what you’re doing or have done to heal the places that you have identified as causing you pain, anxiety & stress. Maybe we can help each other travel this journey to healthier, whole selves who deserve rest & healing!