How to combat deconditioning before able to exercise

Discussion in 'Fibromyalgia Main Forum' started by needtobreakfree, Sep 6, 2014.

  1. Hi there, I was wondering if anybody has any recommendations for me. I did work with a physical therapist through my HMO, but the types of exercises they had me doing were not compatible with CFS and so I had to stop.

    At this point, I seem to be making progress. I have technically had CFS for about three years I believe, although I was not diagnosed until January 2014 after having become severely ill, bedridden, unable to even get myself to the bathroom or lift a finger to type or even sit up, unable to sometimes open my eyes, etc. I am finally now making progress. I am graduating from completely bedridden to partially bedridden, but housebound. I am now able to walk myself to the kitchen, backyard, or bathroom a few times a day. However, I am severely deconditioned from nine months in bed. My muscles in my legs aren't so bad, per se, but cardiovascular conditioning is so bad that standing up is extremely uncomfortable and I can't do it for long. I really want to get to the point where I can stand up for several minutes without having to sit down. I am unable to increase my cardiovascular condition with cardiovascular exercise, because I get PEM from that type of exercise. I try to stand up for as long as I can a few times a day, but it isn't rapidly helping my deteriorated condition. How can I get to the point where my cardiovascular system can keep me upright? I'm not sure what exercises to do, and the physical therapists through my HMO don't seem to understand CFS or PEM very well.

    Thank you!
  2. mbofov

    mbofov Active Member

    You might have postural orthostatic hypotension (POTS). There are quite a few posts about this, you can do a search for them above. It essentially means that your blood pressure drops excessively upon standing (20 points or more for systolic blood pressure, 10 points or more for diastolic BP (the bottom number) - which is very common with CFS, and creates difficulties standing for any length of time. Here's a link to an article by the Cleveland Clinic which has some tips. It's a little bit technical but worth looking at, and has some simple things which can help with this condition:

    It talks about extra fluids, salt, and isometric exercises, among other things - it's worth a look.

    I know it's not the whole answer for deconditioning and it's very unfortunate that your PT's don't seem to know what to do. I hope someone else on this board can give you some tips -

    One thing you can do to find out if this is a problem is to first check your blood pressure lying down, and then upon standing. The wrist cuff BP monitors you can get at the drugstore work pretty well. I think the test is to see what your BP is after 10 minutes of standing (if you can stand that long), or just for however long you can stand.

    Your adrenals may be involved - if they are weak or exhausted it will cause severe physical weakness. A chiropractor who does muscle testing helped me many years ago. I was weak as a kitten, and no doctor knew what was wrong. The chiro did his muscle testing and found my weak adrenals in just a few minutes. He gave me an adrenal glandular product by Standard Process (Drenatrophin PMG). I had to take 3 or 4 times the recommended dose because I was so weak, and within a few days my energy started coming back. This didn't cure my CFS - I have PEM and crash regularly when I overdo it, but I'm better than I was then. I think I would have ended up bedridden without my chiropractor. And adrenal problems can contribute to or cause POTS.

    Last edited: Sep 7, 2014
    RadioFM likes this.
  3. Hi Mary, thank you for the info, and I'll definitely check out the link. I definitely do have POTS. My doctor put me on fludrocortisone, but it barely helps. I think the POTS began from being bedridden for so long. My blood pressure gets so low when I stand I can't even measure it with a blood pressure machine. Eeks. Anyway, thank you again, I'll check out the article. :)

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