Nurse who suffers chronic tailbone pain

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I am a Registered Nurse who has suffered with tailbone pain for over 8 years. Like all chronic pain, it is essential that sufferers get the correct support, diagnosis and treatment appropriate for them as an individual. This blog follows my journey with chronic pain, it expresses my personal opinions and thoughts. It is not intended as a replacement for advice or treatment from your normal Healthcare Provider.

Tuesday, 27 October 2015

Quick update

Just a quick update. My echocardiogram has now been reviewed by a senior cardiologist who has confirmed that I have impairment to the left side of my heart- in other words it is not beating as it should. The heart is damaged. This is cardiomyopathy. However, I need further tests to see exactly what the damage is and if I need any treatment.

I have an MRI booked for Monday, and a follow up with the cardiologist on Wednesday.

As I am not overweight, don't smoke, don't have high blood pressure, drink within the guidelines and exercise regularly she is not sure what the cause is. She feels it may be hereditary, but does not feel it is related to my Hypermobility/Ehlers-Danlos.

I am trying to think positive. I am telling myself that if I didn't have coccydynia, which led to the diagnosis of Ehlers-Danlos/Hypermobility I would not have been referred for an echocardiogram. This cardiomyopathy may not then have been discovered and could have progressed until...until I don't know what.

I am once again waiting on more answers, but this time for my heart. What has caused the damage, how long has it been there, is it progressive, what if any treatment should I be on, and how do I manage it long term.

For the record, my coccyx and piriformis still hurt and I am rather fed up with so many things going wrong at the moment!




2 comments:

  1. My heart goes out to you for all you have gone through. Yes, hopefully this means that the echocardiogram has detected a cardiomyopathy early enough to avoid or minimize having any clinical complications from it. Yes, there are genetic factors that cause cardiomyopathy even in people who otherwise have no cardiac risk factors. Examples include genetic abnormalities that cause cardiomyopathy even in people who otherwise have no cardiac risk factors. Examples include genetic abnormalities of the titan team gene (TTN), Which is a particularly common cause of "dilated" cardiomyopathy. Of course I defer to your treating physicians, as I am no cardiologist, but it probably would be a good idea to discuss these things with them. Wishing you all the best.

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