It has been a difficult year, but my faith and learning about Tension Myositis Syndrome may have saved my sanity and my health. On top of Covid, my mom, my best friend and the closest person to my children, was diagnosed with a very lethal form of cancer and my ex-husband, the father of my children, passed away unexpectedly. Needless to say, that would lend most people to be pre-disposed to a stress-based illness of some sort. However, I have had a lot of previous chronic stress, and I’ve always had mysterious health things come and go, but nothing ever stuck around for too long. I always seemed sensitive to a lot of things like foods, medications, products, etc. and never understood why. About four months after the passing of my ex-husband, I woke up one day feeling like I was walking on little hills. My head felt heavy. I could not see well. After seeing my primary care provider, I was incorrectly diagnosed with an ear infection (not surprisingly it was the dead of winter, and my ear drum was a little red). Antibiotics did nothing to help my cause.
Was It A Migraine?
After a month of frustration, I finally was able to see a very well-known ENT who looked at me and said, “Girl, this is CLASSIC vestibular migraine.” A migraine? I didn’t have head pain, and the symptoms were constant! (Eventually, I developed neck and back pain, and the occasional headache.) She told me yes, there are many migraine variants, and unfortunately, this one is a doozy. She gave me a low dose medication and told me to drastically change my diet. I did those things with no improvement. I consulted a neurologist who said the same thing, migraines are genetic, we don’t know exactly what they are, there aren’t great treatment options, but you can try something else. She asked me about triggers, but the only known trigger I could clearly see was emotional stress. As soon as my stress raised even slightly, or even if I had a negative thought, an aura would come, or the dizziness and disequilibrium would kick up. The internet was filled with horror stories of people never recovering, and the first book I bought on this condition filled me with fear. Doctors had no answers. It was no surprise I got worse, and FAST. As it turns out, fear is the glue that holds the condition into place.
Discovering Tension Myositis Syndrome
I left the neurologist unwilling to try more medication. I’m a health psychologist, I know there is a mind-body connection that is stronger than 99% of medical doctors understand. It was no coincidence that this happened right after major stress, when I was already dealing with some other stress-related physical pangs. I started doing some digging and came across the works of Nicole Sachs, LCSW and Alan Gordon, LCSW. These folks are pioneers of mind-body medicine and focus almost exclusively on chronic pain, which includes migraines of all types. I started listening to their work and applying their strategies, and I’m seeing some very good improvements.
They reiterated what I had already known and felt in my heart and knew from my training as a health psychologist. I have a brain that does not feel safe. My poor primitive brain, mostly my amygdala (alarm center/fear center) and my insula (responsible for noticing body symptoms) and hypothalamus (triggers fight or flight chemicals) were trying to protect me, but in fact they were working against me. The message they were sending through this migraine is
Honey, this world is unsafe. You’ve had too much. You need to stay in bed. Those emotions you want to feel? Yeah, those aren’t safe. Let’s stuff those down. Here’s some dizziness to distract you so you aren’t able to think about what’s happened in your life.
Then the symptoms loop in. The more you focus on them, the more the amygdala rings the alarm bell. It checks in with your prefrontal cortex, your conscious, rational brain and when that confirms the trouble, those neural connections causing the migraines wire in stronger and symptoms get worse. You end up in a viscous cycle of stress/anxiety-symptoms-stress/anxiety.
Migraines, along with many, I’d be willing to say most, chronic pain disorders and other mysterious symptoms without a found cause, may be Tension Myositis Syndrome. These are syndromes that are caused by the brain to protect the nervous system from further harm. They are a distraction tool that your brain uses to keep you in a comfortable state of fight or flight, if that’s all you’ve known from chronic stress, and/or to keep you distracted from emotions it deems too painful for you to fully process and experience. Even many people who have been told they have a structural cause, disc degeneration, for example, actually suffer from tension myositis and have lived years completely recovered after doing mind-body work.
Triggers for Tension Myositis
I’m sure a lot of migraineurs out there are saying “But I have clear triggers, like red wine and high barometric pressure.” Well, what if I told you your amygdala is a sneaky little fellow, and is HIGHLY HIGHLY suggestable. I’ll also tell you this little guy takes short cuts for your survival, and he’s a drama queen. Once upon a time you saw a list of those possible triggers, and your brain remembered a few of them, even if you weren’t aware. You have a migraine because that slight little bit of fear rang the amygdala alarm bell right before that wine, or right after your brain sensed high pressure, and BOOM. Migraine. What looked like a trigger was really just a learned coincidence triggered from fear. The famous psychologist John B. Watson called it classical conditioning.
Don’t believe me? That’s ok. Have you ever heard someone start talking about poison ivy or head lice and you started itching? That’s the kind of the thing the amygdala does. It sends off alarm bells and tells your hypothalamus to activate the very signals in the body to manifest the symptoms you’re thinking about. Focus on them enough, and they can loop in through new, strong hardwired neural connections and stay for quite a while.
If you still don’t believe me, check out the Curable app, or the work of Alan Gordon and Nicole Sachs, or the early work of Dr. John Sarno who coined the term tension myositis syndrome. Newer terms for tension myositis syndromes involving pain have been coined “neuroplastic pain” or “neurocircuit pain”. They all refer to the same thing: brain generated syndromes. Now, I’m not telling you this is all in your head. Your pain, or your other symptoms are REAL. They are very, very real, but it’s not a structural problem or a genetic or chemical problem, it’s a nervous system problem.
Who Is Prone to Tension Myositis Syndrome
So is everyone prone to tension myositis syndrome? Well, I think most of us are. However, some characteristics of people make them MORE susceptible to developing this syndrome. The environmental characteristics of chronic stresses or trauma are absolutely almost always in the picture, but more static personality traits also play a role. Perfectionistic qualities, people pleasers, those of high intelligence, and people known as “goodists” (people that try to do good and treat people kindly above all else), are particularly at risk. These folks often lack self-care and focus on others. They are very self-critical and lack self-compassion. They strive to be perfect or help others achieve their goals. Anxiously attached people with these characteristics are often the ones in the most trouble. Interestingly enough, sometimes people who claim to “not stress” are at risk. Even some avoidantly attached people, whose primary unconscious strategy to stay safe is to repress feelings and avoid vulnerability by diving into distraction, are in a constant subtle state of fight or flight and are very hypervigilant to criticism and suppressed feelings of internal shame and inner defectiveness. Remember, if you aren’t willing to consciously feel and process emotions, your body may decide at some point to feel them for you. (For more info on attachment styles: look up Thais Gibson on YouTube or check out her website.)
How to Manage: Mind-body Exercises
Lastly, you may be asking me, “Well, what can I do about this?” Luckily, there are a variety of mind-body exercises that are absolutely scientifically proven to help. Anything that calms the nervous system down is going to make a huge difference. This may be self-care and meditation, etc., and that might be enough. Yet, these strategies alone won’t work for many people. A lot of the recovery process has to do with letting go of the fear of the syndrome/pain and the symptoms associated with it. Trust me, I know that’s hard to do. However, there are many great people out there like Nicole and Alan who are pioneering strategies and offer amazing free content to help guide you here.
For me, I focus a lot on re-engaging with joy. I stopped deciding to quit my life. I re-embraced my authenticity. Most importantly, I decide as much as possible to stay in the present moment and practice mindfulness. Neuroplastic changes in the brain can ONLY happen in the present moment. They can’t happen when you’re distracted with work, binge watching TV, endlessly scrolling through social media or worrying about your symptoms. In addition, my faith has played a huge role in calming down my fears. When my symptoms flare up, I just say “OK, no big deal” and I go on with what I need to do despite how bad I feel. Now, this isn’t just “pushing through”. I fully accept my symptoms, and I’m not scared of them or trying to push them away anymore. The goal is to make my brain feel safe again. I sometimes just go outside, put my hand on my heart and feel myself breathe in and out. I stop and stare at the tree leaves and talk to God. I remember that I’m still alive! I’m still ok. Despite the tragedies that have happened in my life, or heartbreaks of my past, or current struggles, I don’t have to live in fear.
Fear has many layers, and a lot of times it’s subconscious for most of us. The bad part is what you don’t consciously bring to the surface and repair, you unconsciously repeat, every single time. That’s just how the brain works. That unconscious pattern of thoughts and behaviors can be in relationship with yourself or with others. I’ve had to do some digging to find out where it’s really coming from, but not being afraid of my symptoms has been the number one thing that has caused them to improve. That, along with making sure I continue the joyous things in my life, and trusting God and thanking Him for the breath in my lungs every day has resulted in symptoms decreasing. Mind-body exercises did what medication and medical doctors couldn’t do for me or even explain to me. I have full intent on being one of those fully recovered folks on Nicole or Alan’s podcasts very, very soon.
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