Hearts on Fire, Part 1


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.




8 thoughts on “Hearts on Fire, Part 1

  1. Wow, Michelle! This is indeed revealing news, important for us all to know. Any chance you can use the new info for your case? Looking forward to reading part 2


    1. That’s exactly what I’m hoping for, Sue Ann! In fact, I’m about to call SSA to find out how I add doctors to my application, since my records specifically state my CD is linked to my Tachycardia. Quite a revelation for all of us, and I may have never known had I not gone to donate blood. Crazy!


    1. I’m guessing PVCs are related to the heart. Is that right, Ashley? I’m just starting to learn about the heart and chronic pain, so at this point I don’t know anything about PVCs. I’d love it if you shared anything you know.


  2. I know my heart rate is higher when I am at the doctor’s office, but it has never been that high. This is good information. I am so sorry that you have had to face off of this.


    1. I’m finally starting to put some of the puzzle pieces together, Alice. A lot of people do fall into that category of having a higher pulse when they’ve “rushed” to get to an appointment. This experience has shown me that we have to demand more information from our care teams so we can seek medical help when we need it.


  3. I read your article with a degree of scepticism at first, but then I realized that I am experiencing the same exact problem! I’ve had tachycardia off & on for several years now, they always attribute it to rushing, anxiety, or my history of heart problems. (I had a heart attack & bypass in 1992, when I was only 35). However, my heart has been stable for the last 24 years. Now you’ve made me wonder, since I’ve been battling chronic pain for at least 19 years! It’s definitely something I will discuss with my doctors! Thanks!


    1. I’m so glad, Catherine. I definitely wouldn’t have posted the correlation if it hadn’t been adamantly confirmed by a reputable cardiologist. My doctors that I see for my chronic pain didn’t even know there was a connection. I guess they can’t specialize in everything, so we get to put the pieces of the puzzle together for them.


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