I have EDS. Dysautonomia, undiagnosed but strongly suspected by me (the one who lives within the ‘shell’). CFS was suggested by my genetic doctor as well as his confirmation that my formally diagnosed on paper: fibromyalgia and neuropathy are common in EDS. So is IBS. Essentially, my EDS ‘umbrella-ed’ many of my previous diagnoses.
My echo:
1. Mild diastolic relaxation impairment
2. Global hypokinesis
3. LV function is severely depressed, ejection fraction 25-29%
4. RV systolic pressure 10mmHg (whatever that means, probably normal)
5. Mild mitral regurgitation
6. Mild tricuspid regurgitation
Then thoracic MRI, prescribed by cardiologist raised my EF as high as 52%.
Holter monitor showed: random arrythmias, tachycardia, brachycardia. I was told that my heart is stable and results weren’t reviewed with me. My genetic doctor says that regardless of whether or not my heart is stable, I still have cardiomyopathy as well as regurgitations – and something is wrong with my heart. So many other problems that I’m basically ‘chasing my tail’ and not focused on my heart anymore. No, I do not want CHF! Life is, by far, difficult enough. My grandfather had acute CHF and it was really tough. I suffer chronic suffocating exhaustion that cannot be remediated by any means and, for a time, was labeled as having CHF. At this point, I am not sure.
Are these heart problems related to EDS? Just thought I’d compare notes. Oh, strangely, I had to track down my echo weeks after it was performed and figure out the results myself – others have mentioned this. Doesn’t this seem odd? I was appalled because the word ‘severely’ was contained in my echo and nobody bothered to mention anything about it. Odd, very odd.