What’s it like needing immediate health care during a pandemic?
Terrifying. Unsettling. Overwhelming.
Needing immediate medical attention already elicits a mixture of those emotions; needing it during the coronavirus pandemic only exacerbates things further.
I have rheumatoid arthritis (RA)and other underlying health issues. From the very beginning of COVID-19, I’ve been worried about how contracting the virus would affect my health and recovery.
Then within a few weeks of when cases started to spread near my community in Vancouver, I had to endure a medication change because health care providers at my clinic were exposed to COVID-19.
One the worst parts of living with an unpredictable disease like RA is you never know when new or weird symptoms may pop up. This is especially true when you change medications — could [fill in alarming new symptom here] be a new sign of a flare? A medication side effect? Who knows?
Playing Pain Detective
Over the past few months, I found myself incredibly frustrated with my pain because my rheumatologist reported that my disease activity was low; my level of C-reactive protein (CRP), an inflammatory marker in the blood) were great; and I wasn’t showing any signs of inflammation.
I kept asking, Why am I still in so much pain? Could it be from irreversible joint damage caused by RA? A while ago I had an ultrasound of my hands, which revealed that not only did I have RA, an inflammatory arthritis caused by my immune system attacking my own joints, but also osteoarthritis, the wear-and-tear kind that tends to happen with overuse or age (I’m 34).
I am constantly trying to pinpoint what is causing my pain so I can treat it properly, but living with so many different pain conditions makes it challenging to tell which may be causing what.
Five years into my diagnosis of rheumatoid arthritis I have learned keeping a record of my symptoms is important. Chronic illness is bumpy.
When Pain Comes with Scary Symptoms
I knew the stress of the pandemic and the lack of physical activity from being in lockdown would impact my rheumatoid arthritis but my routine bloodwork was still coming back normal. I should have been feeling better than I was.
This pain also felt different. It came with other symptoms that startled and worried me:
- Numbness in my legs starting from the belly button down that comes and goes, sitting especially triggered it
- Heavy sensation in legs
- Poor balance/feeling off-center
- Back pain and various muscle pain in legs
- Burning pain in my hands and feet
- Sensitive to textured surfaces on my hands
- Increased fatigue
- Odd popping sensations in legs
- Increased cognitive dysfunction (brain fog)
- Increased depression and anxiety
- Overall weakness
- Bruising easily
- Always feeling cold, especially hands and feet (which was originally thought to be Raynaud’s)
I booked a telehealth appointment with my rheumatologist and explained these bizarre new symptoms. She suggested I go to the ER and see a neurologist.
The ER was definitely not a place I wanted to go to during the pandemic, but my doctor happens to be married to a neurologist, so I knew if she was suggesting this, her advice was serious. And I had done enough Googling of my own to be worried about multiple sclerosis, transverse myelitis, and Guillain-Barré syndrome.
However, I had an in-person appointment with my family doctor booked for a few days later. We decided we would wait until after my physical exam, but my family doctor ended up sending me to the ER to see a neurologist anyway.
Down a Testing Rabbit Hole
After my reflexes were tested and came back fine, the neurologist suggested I had some sort of neuropathy. This can be caused by diabetes or some rheumatoid arthritis medications, so I honestly wasn’t surprised I was joining the neuropathy club. But this is also pretty rare apparently — the diagnosing physician said he only sees one or two cases a year. So we weren’t totally convinced. Cue more testing.
After an electromyography (EMG), which evaluates the health of muscles and nerve cells that control them); a couple more doctor visits/telehealth calls; more blood tests; and a second opinion from another neurologist, we discovered I had a copper deficiency — and it was causing myeloneuropathy, a condition characterized by problems with the spinal cord and peripheral nervous system.
Yes, copper caused all this drama and pain. My ass was being kicked by a mineral that makes for nice jewelry and cookware. Who knew?
Thankfully, for once in my chronic illness journey, I was diagnosed with something that was highly treatable. I left the neurologist’s office with a smile on my face, especially since he told me to eat more dark chocolate (it’s a great source of copper).
I turned back to Google to learn more about this shiny new health problem of mine.
How Copper Kicked My Butt: My Deficiency, Explained
I learned that the mineral copper is present in the human body in small amounts to help with necessary brain, blood, nervous, musculoskeletal, and immune system functions. The body also depends on copper to break down iron.
Because copper is used in so many different body systems, a copper deficiency can cause a wide range of symptoms and side effects, including weakness, numbness, pain, fatigue, paleness, frequent infections, neurologic deficits, and bone and cardiovascular issues. It can happen from a poor diet, malabsorption (not getting enough nutrients from food), or an inherited disorder.
I already eat many foods high in copper, so the deficiency was more than likely caused by my autoimmune issues or the medications I take for them, which I will need to investigate further with my rheumatologist.
Treating My Copper Deficiency
I eat fairly healthy but there is always room for improvement, so I will be educating myself and incorporating more copper-rich foods into my diet:
- Oysters, crabs, and other shellfish
- Whole grains
- Nuts, such as cashews, hazelnuts, and peanuts
- Kidney and liver
- Dark leafy greens, such as spinach
- Dark chocolate
As for supplements, it’s important to remember that every case of arthritis is different, each body is different, and what someone else needs may not be the same as what you need.
My doctor appointments and blood tests revealed that I was also anemic and low in vitamin D and vitamin B12, which can also cause similar symptoms as my copper deficiency. For the past six weeks I have been taking copper supplements daily, as well as some others recommended by my rheumatologist, pharmacist, and naturopath.
I was told that these vitamins and supplements may not have an immediate impact, but within a week I noticed a decrease in symptoms, and by week five I was working out again, but without muscle soreness and burning pain in my hands and feet.
I am enjoying my healthy daily dose of dark chocolate, along with plenty of gratitude for having a condition that is so treatable and the resilience to help me get to the bottom of it.
Nothing tests your resilience like navigating the bumpy road of chronic illness in the middle of COVID-19. So far, I’m still winning.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.