When People Say, ‘At Least It’s Just Rheumatoid Arthritis’

man and woman standing with two boys

If you’re living with rheumatoid arthritis (RA), I’m sure you’ve heard about Glenn Frey dying from“complications from rheumatoid arthritis, ulcerative colitis and pneumonia.” I’ve personally already had several people tell me they were unaware you could die from rheumatoid arthritis. It’s difficult for people to imagine in this day and age that we don’t have a cure, and if you watch the advertising for medication, it might seem like it’s the equivalant of having a lingering common cold. “Take this medicine, and you’ll be high-kicking and running marathons in no time!”

Of course, everyone hears “rheumatoid arthritis” and thinks of joints. For those with no experience with the disease, that is understandable. The disease name can be misleading, and many people know someone with one of the most common types of arthritis, osteoarthritis. I could list all the things RA can affect, but the short version is this: It affects everything.

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My journey with RA started in 2011. I was sick for four years before I got a firm diagnosis. It started with pain, fatigue, difficulty walking and skin issues. In 2013, I was working out and training to run a 5K. I had lost 65 pounds and was probably the “healthiest” I’d ever been in my adult life. But after six weeks of training for a 5K, I still could not get my breathing conditioned. Every time I ran, I felt like my chest had a ton of bricks on it and my blood pressure would bottom out. My rheumatologist wrote a referral to a cardiologist.

I went thinking it was nothing. I came out failing all tests. They did an electrocardiogram (EKG), an echocardiogram and a stress test. My EKG was abnormal. When they did the stress test, my blood pressure bottomed out to 90/40 instead of going up like it should. I couldn’t breathe and had chest pains. My echocardiogram showed areas that were lacking oxygen to the heart. I was instructed that if I had a bad episode, I had to go to the emergency room. They scheduled me for a cardiac catheterization, thinking I had a blockage in one of my ateries. I was 33 years old. My family has a strong history of heart disease. Everyone on my mother’s side has had heart disease or a heart attack. My father had a triple bypass at age 52. My husband and I were very worried.

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The day of the cardiac catheterization the doctor doing the catherization questioned why I was even there. “You are so young. Surely this is a mistake.” I told him why and he checked my records and away we went. Also note, at this point I had no diagnosed autoimmune disorder. So to me this was just a weird little oddity.

Cardiac catherizations aren’t painful, but they are stressful. Once it was done, the doctor came in and said, “Great news! You have no blockages. Everything looks great.” And that was that. I was sent home with no explanation for why my blood pressure was always low and bottoming out. My heart doctor told me to come back in six months.

We were not aware at the time that I was pregnant. I actually had the cardiac catheterization while I was about six weeks along with our youngest son. So once we found out I was pregnant, we dropped the issue. We honestly chalked it up to a fluke. We thought it was probably just “a bad heart day” the day I was tested. I mean, they went into my heart and said it was fine. So we moved on.

Fast forward to 2015. I was diagnosed with RA in 2014, and after several months of medication I noticed I was having extreme chest pain and heart palpitations. I couldn’t walk more than a few hundred feet without feeling winded. I brought up the side effect to my rheumatologist, thinking it was just the medication. He said he was concerned that we never really resolved my heart issues from 2013. He recommended that I just go back and have some more testing to see if the same problem was still going on. I went expecting to pass the tests and just change medications, believing it was a side effect.

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Well, I failed everything. Again. Abnormal EKG, lack of oxygen to the heart on my echocardiogram, and the stress test bottomed me out. The cardiologist scheduled another cardiac catheterization — my second in three years at 35 years old. Talk about messing with your head. Your heart is bad. No, it’s fine. No, it’s bad. I’ve had symptons for years. Dizziness, chest pain, heart palpitations. I always chalked it up to, well, I’m not sure what. My motto was “It hasn’t killed me yet” and “They did a cardiac catheterization, my heart is fine!” Surely if there was something really wrong they would have found it.

I had my second catheterization, and it came back normal. So now my husband and I are both pissed. Something is causing me to fail all these tests regularly. Also, it’s not like I’m not symptomatic. I deal with symptoms from this all the time. Something is going on. My cardiologist is “pretty sure” it’s microvascular aterties in my heart not working properly due to chronic high levels of inflammation from my RA. The good news is that it’s not life threatening — yet. The bad news: There’s nothing they can do for microvascular heart issues.

My cardiologist and my rheumatologist refer me to the Mayo Clinic cardiology team for a full work-up. They want to be sure there isn’t something bigger going on. I got an official diagnosis of cardiac syndrome X, also known as microvascular angina.  My condition causes me to be at increased risk of a heart attack and have chronic chest pain.

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So this circles back to where we started. Nothing makes me angrier than when people say, “Oh, at least it’s just RA” or “I have arthritis, too” or “They’ve made such advancements in RA.”

If you have RA (or any other inflammatory or autoimmune disorder) and have any heart symptoms, please don’t blow it off. Push your doctor. Get a thorough work-up.  Our bodies are fighting insane levels of inflammation daily. This puts stress on all our organs, not just our joints. Age does not discriminate. I didn’t write this to scare you, but to motivate you to be aware of symptoms of heart disease, especially if you have a family history of it.

Research is making great strides in RA, and hopefully we will have a cure or a magic pill someday in the near future. I am hopeful, but the reality is a 2015 Mayo Clinic study found that death rates have not fallen for people with RA as they have for people without.

Be proactive. Listen to your gut (and your heart). If something doesn’t feel normal or right, push until you get an answer you are comfortable with. We want you and your heart around as long as possible.

Katie, her husband and their two sons.

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