• Hi there, I understand our symptoms can vary with CFS. Just wondering how many of you experience persistent palpitations and what your Dr.s have said/explained about it? Thanks 🌷

  • @New2CFS Interesting question. I get palpitations on a regular basis, but I’ve never had a medical check regarding them. 🤔

  • Hi there,
    I get palpitations when I have been upright too long. I presume because my blood pressure is falling (orthostatic intolerance) and my heart is beating fast to try and get some blood to my brain.

    Realising this and managing it better means it (pretty well) doesn't happen any more, so fingers crossed yours is as easily managed. Best of luck.

  • Thanks for the replies. Anyone also get Raynaud’s/chilblains. My toe went black/purple this afternoon. I’m new to cfs and I’m finding the symptoms disconcerting to say the least. Vertigo too. 😔

  • Community Moderator

    @New2CFS ME/CFS can involve all sorts of symptoms, but if you find your symptoms aren't common in/consistent with the core diagnostic guidelines ( ) it might be an idea to make sure there's nothing else going on as well. Sadly, having ME/CFS doesn't stop us getting other things (although I hope you don't have anything else).

  • I'm not sure what you mean by palpitations but I experience a number of things that could fall into that category:

    • Tachycardia
    • Skipped/extra beats (confirmed benign with ECG)
    • Sensation of heart pounding even when heart rate is normal

    These all get worse when I've overdone it/am in PEM. I've had many ECGs and echocardiograms and apparently my heart is healthy. People with CFS have been shown to have reduced blood flow to the brain so I assume the increased heart rate might be the body's way of trying to compensate for that. I take medication to lower my heart rate a bit because it helps with conserving energy and allows me to sleep better (my heart will keep me awake/stop me from getting deep sleep otherwise) but I have to be careful not to take too much because when my heart rate drops below 60 I get incredibly nauseous and drowsy and experience strange neurological symptoms.

    Bullet point 3 - the feeling of my heart pounding - is a pretty reliable indicator of me having overdone it cognitively. It also happens after a meal if I'm having trouble digesting food. It will stop me sleeping and unfortunately my heart meds make no difference as they only change my heart rate and the pounding feeling has nothing to do with my heart rate. Doesn't seem to be related to blood pressure either. I've never asked a doctor what causes it because they're usually uninterested in "subjective feelings" like this!

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