As I leaned my head back against the wall, I knew there was only one more thing I had to pass before entering the next room. My vitals. While it isn’t easy for me to donate blood with my Dystonia symptoms, I feel obligated as a universal donor to help others on those rare days I feel up to it. With her fingers resting on my wrist as she took my pulse, the nurse finally said, “At 106 beats per minute, your heart rate is too high for you to give blood today.”
How could that possibly be? I was confused and speechless, to say the least. Since I see someone from my team of doctors at least once a week, I always ask if my vitals are healthy. And each time I’m told they’re fine. My parents suggested that I make an appointment with my primary care physician, and via e-mail, she relayed her discovery that my numbers had been consistently over 100 for the past few months. At my appointment we looked back even further; it turns out my heart rate had been between 100-120 for the past 6 years! In fact, the first time it rose above 100 was at the very same time my Cervical Dystonia symptoms began. I had a feeling this wasn’t a coincidence. But when I asked a couple of my doctors if there was a correlation between Cervical Dystonia and a high heart rate (Tachycardia), they both told me no.
Luckily, I was referred to a cardiologist who solved the mystery for all of us. He asked me questions about my pain levels associated with my Dystonia and the frequency of my pain. Just to be sure, he ordered an Echocardiogram (an ultrasound for your heart) and an Electrocardiogram (EKG). With my results being normal, he drew one conclusion. “People who live with chronic pain or discomfort often have higher heart rates. It doesn’t surprise me that this has been going on since your symptoms first started 6 years ago. We can’t do anything about it. Just know this is now your ‘normal’ heart rate.”
Two thoughts ran through my head. First and foremost, as strange as it sounds, I was ecstatic. This finding is an incredible breakthrough because it’s objective evidence that documents my pain. One of the main problems people with Dystonia have when applying for Social Security Disability is that there really isn’t any objective evidence to substantiate our symptoms. My doctors routinely ask me to identify my pain levels, in addition to my neck spasm levels on a scale of 1-10. It’s all subjective. Even though they can see our heads twisting, feel our muscle spasms with their hands, and hear our muscle spasms when injecting Botox into my body, this is not viewed by the government as objective evidence. This was HUGE news because it’s proof my pain exists, thanks to my heart communicating that information to us.
My second thought? How could a a team of 5 doctors miss something so significant for 6 years? While I shared my frustration with my primary care doctor, I told her this was something I hoped we could all learn from. She vowed to be more aware of her patients’ heart rates, and she appreciated learning such a valuable lesson.
So how does this apply to you? First of all, I greatly believe in the value of education. If you know this information, then you can pass it on to others. My doctors who originally thought there was no connection between my Dystonia and my high heart rate were very grateful to learn one actually exists. Now they can share this with their patients.
Second, if you are someone experiencing chronic pain and applying for SSD, this is objective evidence you can use in your favor. Of course, you will first want to confirm whether or not you have Tachycardia. If you’re typically in the normal range of 60-100 heartbeats per minute, this won’t do you any good. But if your history is like mine, by all means, you will want to use it to bolster your disability claim.
Finally, don’t always believe the nurses when they tell you your numbers are in the healthy range. Here’s why. According to my primary doctor, nurses and doctors aren’t usually concerned about a pulse rate over 100 because it’s natural for people to come rushing into an appointment, meaning their hearts will be beating faster than normal. However, if this is a persistent pattern, then you most likely have Tachycardia and you should see a cardiologist as soon as possible.
In Part 2 of “Hearts on Fire”, we’ll explore the symptoms of Tachycardia, how that relates to chronic pain, and a few things we all need to do to advocate for ourselves with our health professionals.