My Story
I first started this blog as a 20-something finding her way to feeling better in a very hurting body.
Looking back, most of my posts focused on finding healing through slowing down and through finding practices that soothed my nervous system.
Those are great things. Yet my silence in the last 3 years has been because I have been digesting knowledge and practices that I have found infinitely greater.
Everything I thought I knew about healing was turned on its head when I learned about neuroplastic pain. It simultaneously ruined life as I knew it, and gave me back/forward a brand new life that I’d longed for for over 15 years. A new life where I was healthy enough to soar through a doctorate program and become a physical therapist, where I was healthy enough to have a baby. These were things I literally never thought I’d be able to do because of my health.
This is that story. And this is the place from where I continue this blog, my yoga classes, my PT practice, and my life’s work… for now :)
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It was COVID, I was 2 years into PT school, and I was no closer to healing my chronic neck pain or headaches than from where I started.
I went to PT school to try and learn how to heal myself. I figured if none of the PTs I’d met could heal me, heck, I should just learn what they know and go beyond it to heal myself.
Yet I walked out of our low back, neck, and headache lab immersions with worse symptoms than I came in. Sure, I had inexperienced student hands on my body, but my pain was just always out of proportion to everyone else’s. I just hurt more than others, and that hurt me. I was so sick of being broken, and questioned my decision to become a PT for maybe the 100th time.
I learned about pain neuroscience education in PT school and learned a few truths that I’d had exposure to before PT school.
Tissue damage is not proportional to pain.
People can have low back pain and no imaging findings. People can have “scary” imaging findings in their low back, shoulder, or hip and have no pain. Same with the reverse.
Central sensitization is a concept where your central nervous system gets sensitized to pain and you tend to hurt more than others at benign stimuli (ie. light touch really hurts, bright light can cause a headache, etc.)
There were some practices we learned like graded exposure, laterality, graded motor imagery, and mindfulness that we learned could help pain … but never quite budged mine.
Then my world changed.
My best friend in PT school emailed me a course, Beyond Pain Education by Charlie Merrill, MSPT and Dr. Howard Schubiner, MD, that was looking for course assistants to run their first virtual course. One gift of grad school in COVID was being a Zoom expert within a week, so I reached out.
During our first test-zoom session together, I met Charlie & Howard. I thought they were an unlikely duo, and was really intrigued as to how these two were going to pull together an engaging virtual course for the first time. I was so wrong it’s hilarious.
In our introductions at the start of the course, I mentioned that I’d overcome my SIJ and low back pain after 10 years through nervous system soothing, mindfulness, yoga, and questioning the things doctors had told me. But that I had a chronic disease that causes meningitis and accompanying head and neck pain that I will just have to live with.
Dr. Howard Schubiner immediately sent me a private message on Zoom. It was along the lines of, “Hi Tara, I haven’t heard of Mollaret’s Meningitis, but I have worked with a lot of individuals with post-herpetic neuralgia. Their pain ended up being neural circuit disorders, I wonder if yours might be too.”
I had never heard of a neural circuit disorder before this course, but suddenly EVERYTHING in my life fell into place.
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Neural circuit disorders go by several other names -- Mind Body Syndrome, Tension Myositis Syndrome, Neuroplastic Pain, Nociplastic Pain, Psychophysiologic Disorder are the main few. The basic concept is that we do not always hurt because of structural damage in our bodies (like… a virus that lives at the base of my spinal cord), but because of learned neural circuits of pain. Our nervous systems can perpetuate pain signals in absence of physical danger.
This may sound radical, but it’s pretty simple evidence-based pain neuroscience. There are fMRI studies (functional magnetic resonance imaging of the brain in real-time) that show that when a painful body part is touched or thought about, the sensory cortex of the brain is not the main place to light up but actually brain areas associated with threat, memory, emotions, and meaning are activated. This is particularly true for chronic pain. This means that the area of our nervous system activated when we are in pain is not a body part … it is these OTHER neural pathways in our body. Therefore, to change our chronic pain, we must address what is ACTUALLY happening, which is the firing of pain neural circuits.
These pain neural circuits become the perpetuator of pain, not the body part (or in my case, not the virus).
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I stalked Howard Schubiner by e-mail for 2 months before he agreed to meet with me on the phone. And I told him my story.
I was diagnosed with a very unknown disease caused by HSV2 called Mollaret’s Meningitis by spinal tap at age 21. I went on to have meningitis two more times so far. When I got meningitis I knew because it hurt to walk, to think, or to do anything. I had infectious disease doctors scold me to be more careful, and to stop getting meningitis so much because I wouldn’t always “bounce back so well.” (I didn’t think I was doing that well, but I would sit head down ashamed rather than speak back.) I was afraid to be intimate with other people for years because I didn’t know if I’d give them meningitis too.
I let him know that because of this virus, many days around 3pm I would get a headache and neckache that at least 2 nights/week would cause me to go to bed around dinner time. I called it my “meningitis pain.” I told him that I thought the virus replicated itself enough by 3pm to cause me the start of meningitis, but I’d sleep it off. This is why I had to manage my stress so much, and had to manage my commitments and energy so much. I couldn’t let the virus take hold.
I told him my condition often left me in so much pain I’d just cry myself to sleep, and limited my entire life -- my aspirations, what I thought I was capable of, and what I had to give up from my old life. I let him know that it seemed like maybe it was related to caffeine, but that’s only sometimes (sometimes I’d have coffee or chai tea and I didn’t get a headache, but other times I did). Maybe it was related to red wine like an acupuncturist told me -- but it seemed like it depended on the type of red wine, or the time of year, or really just differed from occasion to occasion.
He listened to everything I had to say. Then said, “Well, that is very interesting, because that is not how viruses work in the body.” He let me know that it’s impossible for a virus to replicate itself in the body enough to cause the beginning symptoms of meningitis on the daily, then to feel fine in the morning upon waking. He let me know that one cup of coffee is not enough to cause an afternoon headache.
He let me know about the neural processes of predictive coding -- how our brain learns what is safe and dangerous all the time, and sends our body signals based off of these learnings to protect us. He told me that my symptoms were most likely due to mindbody syndrome, not a dangerous virus living at the base of my spinal cord that replicated enough to send me daily headaches and neckaches. We made an evidence list together for mindbody syndrome, came up with a safety mantra I could use when I felt symptoms, and hung up the phone.
I cried for 3 hours straight. I was both relieved and disappointed at the same time. I was pissed, I was suspecting, I was excited, I was a bright mess of possibility and grief.
But above all, I was pragmatic. I was a research scientist for 6 years after all. The science actually made sense. Unlike the odd explanations of viral physiology and body biomechanics I came to piece together from multiple practitioners to explain why I always hurt, a neural circuit disorder made so much more sense. Just because your brain happens to be in your head doesn’t mean pain is in your head -- your neural circuitry related to pain pathways extends through your whole body. It just means that you need to focus on neural circuits of pain in order to heal your pain … not on the thousand body parts you’ve tried to fix. So that’s what I did.
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One month later, I was 90% better. Today, I am 98% better. The missing ingredient in my pain journey was the idea that recovery was an option. I had written “the belief that you’re broken is what is broken” about my low back and SI joint pain, but I had left out half of my body because of my lack of pain neuroscience education.
Do I still have a virus that lives at the base of my spinal cord? Yup. Does it affect my daily or weekly life? Absolutely not. Does it give me headaches or neckaches -- hell no! It never was giving me them, besides the very few times I had meningitis. This was a learned neural pain pathway that I worked to overcome. Through this blog, I’ll teach you how.
Has it given me meningitis again? I think so, but I did not get a spinal tap because I knew what to do.
I tell the final piece of this story because I want to emphasize that a brain-first approach to pain still works even when there IS something structurally wrong (ie. meningitis attack).
The day before my physical therapy boards, I got my full-blown meningitis symptoms. I could not put my chin to my chest, it hurt along my entire spine to walk, and my headache was debilitating. I knew I did not want to put off taking my boards as I’d been studying non-stop, so I used my new skills.
I told myself I was going to be okay. I practiced deep breathing. I focused on other areas of my body that did not hurt and used somatic tracking skills. I surrounded myself with things I loved -- like chocolate chip cookies and baths. I made a worst-case scenario plan for myself -- I could re-schedule my boards, I could start my next clinical rotation late, and I could ask for accomodations for myself. I reminded myself that meningitis always passes, that my body has an incredible capability to heal. And I asked myself if my body was being reasonable right now. Truly, it was. My immune system was likely down far enough to warrant the ability of a virus to replicate itself over a few days to cause meningitis.
After months of studying, I went on a 3 day ski hut trip with my friends, got little sleep, ate a diet all over the place, and came back with one day before my boards. I was about to move to a clinical rotation for 3 months and still hadn’t secured housing. I was super stressed because this moment meant a lot for my future career … it was my last step to becoming a PT! So did it make sense that maybe just maybe months of chronic stress, studying a little too hard, followed by a really really fun highly demanding ski trip may have brought my immune system down? Yeah, it totally did.
Comforting myself in the knowledge that my body reacted really rationally and that I kind of respected that was a wildly different way of reacting to my meningitis than I had in the past. This calmed me enough to take my boards the next day (and pass).
My meningitis episodes in the past were 14 day events of extreme symptoms, emotional distress, and laying in dark rooms. This last meningitis episode I described, I sat in an infrared sauna eating chocolate chip cookies and laughing at holiday Netflix movies for 2 days and cuddling with my husband. I was symptom free after only 2 days.
That is the promise of a pain neuroscience based approach to pain. That is the possibility of a mindbody approach to any chronic symptoms you may have.
And that is the gift I hope to share with you here moving forwards.
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I stopped blogging and sharing for a few years because I had to wrap my head around what this all meant. I didn’t know how to pick up old conversations on pain and wellness with this new information and life-changing experiences I’d had. I didn’t know if I was ready, and if others were ready, for this information.
Then I decided this really isn’t about me. It’s information, and people deserve all the true information they can get.
Ultimately, like the great mother of modern dance Martha Graham said,
“There is a vitality, a life force, a quickening that is translated through you into action, and there is only one of you in all time, this expression is unique, and if you block it, it will never exist through any other medium; and be lost. The world will not have it. It is not your business to determine how good it is, not how it compares with other expression. It is your business to keep it yours clearly and directly, to keep the channel open. You do not even have to believe in yourself or your work. You have to keep open and aware directly to the urges that motivate you. Keep the channel open. No artist is pleased. There is no satisfaction whatever at any time. There is only a queer, divine dissatisfaction, a blessed unrest that keeps us marching and makes us more alive than the others.”
On with the blessed unrest <3