Exploring possible causes of my chronic pain outside of hypopara
I'm doing a process of elimination in hopes of better managing my pain
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As January creeps along, I’m back to work, balancing publishing and column deadlines, and myriad doctor appointments. Taking time off and adjusting my holiday schedule to give myself more breathing room turned out to be a great gift. I managed to crawl out of a vicious seven-week pain cycle, spent time with loved ones, and submitted a pitch for an unexpected publishing opportunity.
I’m starting the new year by focusing on finding better ways to manage my chronic pain, including some new testing.
Right before the holiday break, I was stuck in a migraine-vertigo cycle that my medical team suspects was exacerbated by spasms in my left shoulder and neck that caused cervical instability. While the cycle has broken, the pain continues. I finally approached my medical team with the question: Is it just hypoparathyroidism, or is it something else?
The trouble is, hypopara (another name for my disease) presents so differently in each patient, it’s not a question anyone can easily answer. After meeting with several of my doctors and making a list of next steps, I have started a process of elimination.
In search of pain relief
My first step was to get a new mattress and pillow. This felt like an insurmountable task when I started, and I spent several pain-filled, sleepless nights researching, trying to find recommendations from actual customers and not review sites that get kickbacks from mattress companies. Thankfully, I found the website The Mattress Underground, which contains a forum where people with chronic pain discuss different types of mattresses they’ve tried.
A few names kept popping up repeatedly: DLX Mattress and Satvaa. Both had good return policies, great customer service, and even on Reddit — a site I find particularly negative — people recommended them. After doing a mattress phone consultation, DLX won me over because its mattress was adjustable. I chose the 14-inch Premier Hybrid, which has a foam layer between the spring layer and the mattress topper that can be adjusted in firmness as needed.
It takes one to two months to break in a mattress, and my partner and I are just about at our one-month mark. My ribs have felt better, and we’ve made some adjustments to address the pain in my lower back and hips. This is the most comfortable I’ve slept in years, and I’m hopeful that the next month solidifies that this mattress was the right choice long term.
Next, I addressed my three, decade-old pillows that I like to call my gremlin stack. They in no way supported my spine and neck, and I definitely wasn’t doing my shoulder any favors by snaking my arm through them to sleep. But I have a graveyard of pillows in my house from trying and failing to find something more supportive yet comfortable.
Thankfully, while doing the mattress deep dive, I kept coming across a pillow by Coop.
What made Coop pillows different? They were adjustable! And with the way my body’s needs fluctuate, adjustable is my favorite word. I ordered the crescent shape, a treat as a side sleeper, and it came with a bag of filling that’s a mix of shredded memory foam and microfiber.
It took me a few days of adjusting the filling, but then I fell in love. I did have to figure out a new position for my shoulders, as I was now sleeping on one pillow and not three, and that’s still a work in progress. But I liked the pillow so much that I bought the travel size for my suitcase and a body pillow.
While all these changes really did help, the pain is still interfering with my work in a big way. To get more information and try to answer the question, “Is it hypopara or something else?” I met with a genetic specialist to rule out connective tissue disorders. Because my late mother was adopted and we have no contact with her biological family, we don’t know what might be in my extended medical history.
Once my results are in, my next appointment will be with a physical medicine and rehabilitation physician. This doctor, in simple terms, is the medical side of physical therapy. They will update my care plan, which my physical therapist will then implement.
Following this physician, I have a list of other specialists with whom I may benefit from consulting. I likely have a long road ahead of me, one that may not have a concrete diagnosis or solution. But I’m hoping that by spending the time, energy, and money on taking steps to support and investigate my symptoms, I can better manage my pain and keep working. I will continue to share my journey in the hope that it is useful to other patients.
Note: Hypoparathyroidism News is strictly a 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.
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