Having recently undergone a series of cardiac tests to monitor my ticker, I’ve been doing a lot of research about what can (and often does) go wrong with the heart in ME/CFS. The most common things seem to be mild tachycardia (both as part of PoTS and outside of it) and a rather unusual “hair trigger” for a rise in heart rate.
Sally does a great job of explaining heart rates on her blog here and I have tested it out on myself. We have eerily similar results. Basically, in a healthy human being, to get the heart rate up for a “cardio work out,” one usually has to walk quickly or do something similarly vigorous. For Sally and me (pun intended :)), all we have to do is brush our teeth. I have no doubt many of us are just the same. Between this and my very short supply of energy, it’s hardly any wonder why vacuuming my two bedroom apartment feels akin to running a marathon and requires a week’s recovery.
Even more uncomfortable is the fact that my heart rate will kick it up to a speedy 150 bpm without so much as flexing a toe while I’m flat on my back. Tachycardia, by definition, is a rapid heart rate (over 100 bpm) while at rest. It will last anywhere from 30 seconds to as long as 3 minutes. Always it coincides with fits I have self diagnosed as paroxysmal dystonia, which I discuss in depth here. Since the tachycardia sometimes begins before I feel the muscle changes and at other times after, I really can’t definitively say that the muscle paroxysms actually cause me to go into tachycardia. I also can’t say the tachycardia causes the paroxysms since I have tachycardia all the time without them. I have never had paroxysms without the tachycardia, however, which makes me think they are linked; perhaps even kicked off by the same chemical, electrical misfiring or whatever neurological dysfunction that makes these things happen, as they both seem to be essential to these attacks for me.
Apparently, my 48 hour holter monitor also revealed some other not-so-concerning electrical stuff, such as some mild SVE’s, but nothing to phone home about. I will say this much. With all the sleep this study cost me and as little as it revealed (I already knew I had tachycardia and no one gives a rat’s ass about SVE’s), I’m fairly certain I won’t be repeating it. Not only was it difficult to wear the monitor for two days and try to sleep with it (not to mention the fucker shocked me twice), but here I am, almost three weeks later and my body is still attempting to heal 3 of the 5 lesions caused by the adhesives they use to attach the leads. You try sleeping with red, raw, puffy, itchy, burning skin between and under your breasts on an 85 degree night every night for weeks and tell me how you feel, healthy or not.
In all seriousness, I find myself asking more and more, “As someone with ME/CFS, when the tests they give me turn out negative far more than they show up positive and impact my well-being so negatively, is it really worth it to continue being their guinea pig?” I’m beginning to understand that an ability to leave the house isn’t the only reason that severely ill patients aren’t going to doctors and I’m wondering why I haven’t yet made the same choice. Is letting go of the hope that people with medical degrees can improve my health the same thing as giving up? Much to ponder.
On a final note, I can’t help but think all this funky fastness has something to do with the autonomic dysfunction so overwhelmingly present in ME/CFS and FM patients. I don’t know for sure, but I’m willing to bet FM patients have just as many similarities in HR, Tachycardia, PB, etc. and I can’t help but think the fact that our autonomic systems get stuck in sympathetic (fight/flight) mode for days HAS to be related to our hearts increasing in pulse so quickly. After all, wouldn’t this be related to cortisol and other hormone levels which routinely get released when we trigger a fight/flight reaction? I don’t want to get too deep into this discussion, as I have a lot to say about it, so consider it a preview of what I hope to be my next, fully original, blog.
As usual, I’d love to hear your thoughts about all this.