What is it like needing immediate health care during a pandemic?
Terrifying. Unsettling. Overwhelming.
I am already immunocompromised from rheumatoid arthritis, covid-19 is a great threat to me and the stress of the pandemic has had an obvious negative effect on my physical and mental health. Not only did I have to be afraid of the coronavirus but I went through a medication change because of the lock down. I have to be fearful of my own health, especially when I suddenly start experiencing some very alarming and mysterious symptoms. The ER was definitely not a place I want to go to during a pandemic.
I’ve found myself incredibly frustrated with my pain because my rheumatologist says my biologic is keeping my disease levels low, I’m not showing inflammation like I am feeling. I kept asking why am I still in so much pain? Is it the irreversible joint damage caused by RA? Awhile ago now I had an ultrasound on my hands with the results being not only do I have rheumatoid arthritis there but also osteoarthritis. Remember now, chronic illnesses come with friends. 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 that’s become a challenge.
Because of the covid-19 outbreak I had to switch from monthly infusions of my biologic to self injection, which didn’t happen over night, I missed a dose of medicine waiting for the switch so I was prepared for a flare. I knew the stress of the pandemic and the lack of physical activity would have an impact on my rheumatoid arthritis but my blood work came back normal. I should be feeling better than I am.
But this pain was different and it was coming with other symptoms that startled me.
When I had a telehealth appointment with my rheumatologist and explained these bizarre new symptoms she suggested I go to the ER and see a neurologist. However in a few days I had an appointment with a family doctor to see me in person. We decided we would wait til after my physical exam but my family doctor ended up sending me to the ER to see a neurologist too.. My weird symptoms included:
- 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 aka brain fog
- Overall weakness
- Bruise easy
- Increases raynauds syndrome symptoms of always feeling cold
These were red flags to my physicians to see a neurologist and get tested for humira caused MS, Transverse Myelitis or Guillain-Barré Syndrome.
In a sense I have prepared myself for different diagnosis to pop up, so far none of them have been scarier than my rheumatoid arthritis, just small ones that tend to come with it and for that, I am grateful, in an odd way. I’m not grateful to have RA, osteoarthritis, fibromyalgia, endometriosis, raynaud’s secondary, anxiety, depression and now myeloneuropathy, I mean, who the f**k would be? I guess when you are facing something even more serious than your other diagnoses you’re grateful when those tests come back negative or treatable.
After my reflexes were tested and came back fine the neurologist had suggested polyneuropathy. It’s often caused by diabetes or some rheumatoid arthritis medications, so I honestly wasn’t surprised I was joining the neuropathy club but what really surprised me is what is causing my neuropathy.
After an EMG, a couple doctor visits/telehealth calls, blood work and consulting with a neurologist we discovered I have a copper deficiency and it is causing something called Myeloneuropathy.
Yes, copper caused all this drama and pain.
So how did something so simple as copper cause me so much pain? Well, it’s rare according to the diagnosing neurologist, he only sees one or two cases a year. I can tell it’s also rare because there’s not much talk about it in any social media platforms and finding copper gluconate 3mg is proving difficult.
What is a copper deficiency?
Healthline says: Copper is more than a metal used to cover pipes. It’s present in the human body in small amounts and helps the body perform needed functions in the brain, blood, and more.
Now what? What am I going to do to treat this?
I already know that I eat fairly healthy but there is always room for improvement, so I will be educating and incorporating more copper rich foods into my diet. Diagnosing neurologist suggested eating more dark chocolate which is by far the best treatment I have ever been prescribed for any of my ailments. However the culprit for my deficiency is not diet, I already eat a lot of the foods high in copper, it’s a deficiency more than likely caused by my autoimmune issues or the medications, something I will need to investigate further with my rheumatologist.
Most people can get away with proper nutrition just from what they eat but not me and it’s been a tough lesson to learn, quite painful in fact. I am hoping that the diet police don’t come after me. I need extra support from supplements, diet won’t cut it.
When I saw Tim Spector, a world class scientist, speak about diet earlier this year at the Canadian Rheumatology Conference he went on about supplements being mostly rubbish for the majority of people and that wrongfully influenced me at the time. I will admit that one reason I never really took supplements serious is because I didn’t have a proper diagnosis, the research is difficult to follow, and I am a single mom on disability they are almost impossible for me to afford on a regular basis. The supplement and vitamin world is overwhelming.
But now I am anemic, low vitamin d, copper deficient and low in b12, not from lack of trying with whole foods. I have to treat it like a chronic illness, tough dozen or so pills to swallow each day.
National Institutes of Health on Copper Rich Foods
Selected Food Sources of Copper
|Beef, liver, pan fried (3 ounces)||12,400||1,378|
|Oysters, eastern, wild, cooked, 3 ounces||4,850||539|
|Baking chocolate, unsweetened, 1 ounce||938||104|
|Potatoes, cooked, flesh and skin, 1 medium potato||675||75|
|Mushrooms, shiitake, cooked, cut pieces, ½ cup||650||72|
|Cashew nuts, dry roasted, 1 ounce||629||70|
|Crab, Dungeness, cooked, 3 ounces||624||69|
|Sunflower seed kernels, toasted, ¼ cup||615||68|
|Turkey, giblets, simmered, 3 ounces||588||65|
|Chocolate, dark, 70%-85% cacao solids, 1 ounce||501||56|
|Tofu, raw, firm, ½ cup||476||53|
|Chickpeas, mature sees, ½ cup||289||32|
|Millet, cooked, 1 cup||280||31|
|Salmon, Atlantic, wild, cooked, 3 ounces||273||30|
|Pasta, whole wheat, cooked, 1 cup (not packed)||263||29|
|Avocado, raw, ½ cup||219||24|
|Figs, dried, ½ cup||214||24|
|Spinach, boiled, drained, ½ cup||157||17|
|Asparagus, cooked, drained, ½ cup||149||17|
|Seseame seeds, ¼ cup||147||16|
|Turkey, ground, cooked, 3 ounces||128||14|
|Cereals, Cream of Wheat, cooked with water, stove-top, 1 cup||104||12|
|Tomatoes, raw, chopped, ½ cup||53||6|
|Yogurt, Greek, plain, lowfat, 7-ounce container||42||5|
|Milk, nonfat, 1 cup||27||3|
|Apples, raw, with skin, ½ cup slices||17||2|