The road to recovery is easier when the enemy has a name

There are many different sayings about war that boil down to the colloquial phrase “The known enemy is always better.” I often hear it bandied about the chronic illness community, and it’s fitting because I feel like I’ve been at war with my body this year. Thankfully, I may have just seen my enemy’s face.

I’m no stranger to fighting for a diagnosis, both as a young teenager discovering her hypoparathyroidism and even earlier this year, when it took months to add occipital neuralgia and myofascial pain syndrome to my comorbidity list. I’ve been hunting again for answers since having vertigo and a pain flare in June, and my care team and I finally narrowed down our theories.

After multiple MRIs came back with clear results, my physical therapist theorized that my recent round of middle back pain and seemingly cervicogenic vertigo were from muscle spasms caused by overuse without correct recovery. She advised me to visit an ear, nose, and throat (ENT) doctor to rule out any inner ear dysfunction — especially because lying down near airflow, such as a fan, also causes me vertigo. She wanted a second opinion about whether I needed vestibular rehabilitation, which is basically physical therapy for the inner ear.

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Luckily for me, I found an ENT right around the corner. Not only were the online reviews promising, but the doctor’s wife was also in my psychiatrist’s book club. When I walked into the small waiting room, one of my favorite movies was playing, and both staff members immediately complimented my hair.

This set the mood for the rest of the appointment. The staff was kind and knowledgeable, taking a detailed history of my symptoms. When the doctor arrived, he asked thoughtful questions, building a clear picture of the past 10 years, since my first bout of vertigo in early 2016.

I met with the audiologist to do extensive ear tests, which included a pressure check, responding to different volumes and tones of beeping, and repeating words read aloud. At the end of the screening, the audiologist gave me the great news: My test results were normal, ruling out many inner ear conditions that cause vertigo, like Ménière’s disease.

Once the doctor reviewed my results, he explained that in his professional opinion, all of my vertigo — including my uncommon dizziness from fans — is cervicogenic, meaning it stems from the neck and jaw and is caused by things like inflammation and muscle spasms. He did not recommend vestibular rehabilitation at this time, just focused physical therapy.

The spread of my myofascial pain syndrome

The following day, I met with one of my massage therapists who specializes in myofascial release, and she explained her theory. She believed it wasn’t only muscle spasms causing the issue, but also the spread of my myofascial pain syndrome across my middle back. Around my scapulas and down my ribs, my muscles were extremely tight, inflamed, and full of the tender knots associated with myofascial pain.

She mapped out on my body where she felt the shift, and we talked about what emotionally and physically was happening before and after the flare. My massage therapist believed my body was still carrying trauma from my initial injury in November, alongside emotional stress and grief from several big life changes that rolled in this summer.

I took her insights back to my physical therapist, who agreed with the assessment. We began a more targeted selection of exercises. I also shared this information with my eye movement desensitization and reprocessing therapist, who is working closely with me on a plan to not only address the pain, but also the underlying trauma that may have helped cause it.

Slowly, things have started to change. My body is still tight and inflamed, but my back is releasing more easily with each massage and physical therapy appointment. I’m still fighting cervicogenic dizziness, but it’s milder than it has been over the last few months.

I’m sending all my hope out to the universe that I’m finally making headway, not just having a short respite.

The road to recovery stretches out before me, likely months longer, and I’m frustrated and angry. Not being able to type on a keyboard feels like being trapped in a glass box. Dictation and typing via my phone and iPad have slowed my pace to a crawl. I’ve done the bare minimum of work over the last several months, and my creativity is screaming in desperation.

For now, I’m trying to focus on being grateful and hopeful that I have a more targeted recovery plan. I’ve been through worse situations, and this new knowledge will help me continue the battle on higher ground.

Note: Hypoparathyroidism News is a strictly news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.