New medical diagnoses answer months of questions

After three more diagnoses and five weeks of recovery, I’m thrilled to be back writing columns. Over the past year, I’ve documented my journey to finding solutions to my increasing pain levels. At first, my medical team agreed that a large part of my pain stemmed from hypoparathyroidism symptoms that had worsened due to grief and the strain of speed-writing a book while my grandma was in hospice. The problem was, despite time and rest, I was getting worse.

My chronic shoulder pain started to include my neck and the area beneath my shoulder blade, and after an acute neck injury in November, I was trapped in a migraine-vertigo cycle for months. While a new pillow and mattress did help, I had gone from working 25 hours a week to four. I was months behind in getting book pages to my literary agent, and writing columns became increasingly difficult. It stumped my medical team.

After a host of blood work and genetic testing came back clear, I broke down in my endocrinologist’s office, distraught at not getting better. After consulting with his team, he suggested an appointment with a physical medicine and rehabilitation (PMR) doctor. A PMR doctor is, in simplest terms, the medical side of physical therapy. It took several weeks for me to find a doctor who was open to new patients and willing to take my case.

Recommended Reading

Nov. 28, 2025 by Heather Novak

With hypopara, curiosity about worsening symptoms is crucial

Finally, a breakthrough

I’ve been in chronic pain for so long, and I assumed that most of it was related to my disease. Hypopara (another name for hypoparathyroidism) symptoms include anxiety, depression, bone pain, muscle pain and spasms, brain fog, nausea, and fatigue, which can overlap with many other conditions. My PMR doctor explained that while hypopara may make me more susceptible to pain issues, it was not the only factor at play.

She explained that I have a curve in my back, which causes my hips to be in different places. My decades of hip and lower back pain and spasms are, in large part, because of my scoliosis. She was flabbergasted that this had not been addressed in my youth, whether with exercises, stretching, or a brace. She also said this is why I find mobility aids so helpful, because they reduce my pain by distributing my weight differently. While I knew I had a spinal curve, I hadn’t understood how it affected my everyday life.

My shoulder and neck hurt for two different reasons. The chronic shoulder pain is caused by myofascial pain syndrome, which means both my muscles and the connective tissue surrounding them are inflamed. Alongside that, the reason why I’d been trapped in the migraine-vertigo cycle — and am still very prone to them — is because of occipital neuralgia.

Occipital neuralgia is a headache disorder caused by inflammation or injury to the occipital nerves, which run from my neck over my skull to my eyes. The condition can also worsen with stress and anxiety.

The doctor connected me with an occupational therapist who came to my home and helped me redesign my workspace and change the way I work. Both my doctor and the therapist believed that a significant amount of my pain was from typing. Changing my workspace and using a traction pillow twice daily made a significant difference.

To support my recovery, my psychiatrist increased my anti-anxiety medication, and I returned to eye movement desensitization and reprocessing therapy to help manage my anxiety. I also increased my physical therapy and massage frequency, and I bumped several deadlines. In the past month and a half, I’ve had a few migraines and pain flare-ups, but they’re becoming shorter and more manageable. Next week, I have a follow-up with my PMR doctor, where we will decide if a steroid shot will benefit me.

The biggest and most difficult change to my work life is that I must rely primarily on talk-to-text software and type sparingly. While I’d been experimenting with dictation over the past year, I thought it was a temporary means to an end. Unfortunately, it turns out that dictation will be a regular part of my career moving forward. Not only for columns and books, but also for texts and emails. Talking all day is exhausting, and I have to retrain my brain to think about writing differently. It’s difficult, even after significant practice, to capture my narrative voice with dictation.

I’m so thankful to have answers and to finally return to work after a long break. Months of migraines and vertigo are hopefully behind me, and I finally feel like I’m catching up on the life I missed. It’s proof that even though it was incredibly challenging, pursuing answers for my new and worsening symptoms was absolutely the right choice for me. I’m glad I listened to my gut.

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.