• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. J

    Is this a typical crash feeling?

    Maybe consider asking for a tilt table test Julie? Might need referral to cardiology first to get it. But you sound a definite candidate for a referral. I can't diagnose but I recognise a lot of your symptoms. I had a tilt table today as it happens. It was fine. Much improved equipment from...
  2. J

    Is this a typical crash feeling?

    Hi Julie You are going through a tough time. There is a lot to think about. None of this is straight forward or easy. One definition of POTS is heart rate going from lying to standing , should be 28 beats or more. My heart rate is 60 lying down for a while. Then can go up to 100 to 120 first...
  3. J

    Is this a typical crash feeling?

    Please consider Postural Orthostatic Tachycardia Syndrome or POTS. It is sometimes linked to CFS. Some of your symptoms sound similar e.g. Symptoms exacerbated after showering and it may explain some of your anxiety. POTS is very much more treatable than CFS. I have POTs as a result of also...
  4. J

    If people do recover from post-viral fatigue syndrome without CFS then why can't I find any?

    Over A year! Well largely rested. I was at a residential college and so did lectures on tape in bed and had meals provided. As I improved I did very small walks. The college was set in lovely grounds so I could be in nature easily.. I knew nothing about pacing, but just did what my body allowed...
  5. J

    If people do recover from post-viral fatigue syndrome without CFS then why can't I find any?

    I was diagnosed with post viral fatigue following misdiagnosed glandular fever in 1989. I recovered for 13 years before getting into a situation where a number of stressors tipped me into a health decline again and I have been ill with ME and Pots for 12 years. My 13 years recovery included...
  6. J

    Can't I take any medicine for Tachycardia?

    Ivabradine is amazing. I take 2.5mg for tachycardia. My blood pressure is always on the low side and I couldn't tolerate a beta blocker because of that. 2.5 mg ivabradine is a very small dose. Angina patients on it would be taking considerably more I believe. i do need to keep well hydrated...
  7. J

    New M.E/cfs diagnosis

    You might like to research Ivabradine. It is available in the UK. I had a cardiologist suggest propranolol or ivabradine for my POTS which followed my ME and is probably viral in origin. I had a horrible reaction to propranolol as it lowers blood pressure. I couldn't stay awake and felt awful...