cfids, pots, and aerobic exercise

Discussion in 'Fibromyalgia Main Forum' started by moreinfoplease, Sep 9, 2008.

  1. moreinfoplease

    moreinfoplease New Member

    From what I have read, exercise is a problem for people with cfids, causing post-exertional fatigue and possible worsening of symptoms,

    but at the same time no exercise causes deconditioning which causes worsening also.

    What I am wondering about is how pots (postural orthostatic tachycardia syndrome) contributes to the whole issue.

    If your heart races as if you were aerobically exercising every time you stand up,

    does that have the same negative effects as if you *were* in fact aerobically exercising?

    Even on florinef and midodrine my heart rate continues to go really high as a result of standing.

    After a 10 minute shower my heart beat is 150 (without the midodrine), and aprox 120-130 on 10 mg of midodrine.

    I am going to go back to the cardiologist to address the fact that these meds are not sufficiently addressing the pots symptoms.

    I am interested in hearing input on the cfids/pots/aerobic exercise relationship.
  2. ellikers

    ellikers New Member

    I would definitely echoe what kathy said that no one with CIFDS and POTS should engage in aerobic exercise without a doctor's approval/knowledge.

    I think people with CFIDS do need to exercise, because you are right, without movement and elevated heart rate, people do decondition and often get worse. But POTS might mean you need to be REALLY careful ... such as mild exercise while monitoring heartrate, etc.

    I swam to exercise when I had CFIDS ... I started really slowly and increased very gradually. That worked WONDERS for me. It was very low impact, didn't flare my muscles up, etc.

    I know it's hard to exercise with these illnesses ... I think what helps is re-defining what "exercise" means ... I started SLOWLY treading water, did that a couple of minutes and was too worn out to continue. I'd praise myself for that success- HOORAY! GOOD JOB! YOU ROCK! Then I'd come back a couple of days later, did the same, increased if I could. I think in THIS way we can slowly get better and increase our abilities. Causing a flare OBVIOUSLY does not help.