Question about possible dysautonomia

Discussion in 'Fibromyalgia Main Forum' started by hopeforever, Jan 28, 2013.

  1. hopeforever

    hopeforever New Member

    I'm pretty much housebound with a myriad of symptoms like fatigue, pain, headaches, chills, shortness of breath, etc. The list is very long. Every month, I get these 'episodes' as I like to call them, where I start to get extra 'spacey', then have trouble breathing, severely dizzy, can't sit up, my calves feel rock-hard, the fatigue is so bad I feel like I'm dying.

    I've been evaluated by a ton of doctors - I've given this some thought and read up and feel I have dysautonomia but a top-notch neurologist I saw refused to do a tilt-table test because the day I saw him I was sitting upright and acc to him "You can't have dysautonomia bc you wouldn't be able to sit up" - well I mostly can but many times I can't. Oh I forgot to mention-during these 'episodes' I also feel like peeing a lot.

    Anyone else get this? A CFS doc had suggest Midodrine a long time ago but my BP is above normal so that's a no-go. Oh yes, wicked headaches too....

    Any suggestions other than elevating the head of my bed, compression stockings, etc.?? this stuff debilitates me like nothing else - I can't barely move! thanks in advance!
  2. IanH

    IanH Active Member

    Dysautonomia is not strictly a disease. The top-notch neurologist is also wrong when he says you would not be able to sit up. The dysautonomia can affect any/many different autonomic systems.

    Dysautonomia is a syndrome of ME/CFS as well, just as fibromyalgia is however it is not usual to add dysautonomia to the symptoms because it is so general. It is better to test for the specific symptoms such as postural orthostatic tachycardia.

    Your rock hard calves suggest that you do have fibromyalgia but they can also be caused by metabolite imbalances.

    Were you diagnosed ME/CFS by the CFS doc?
    Did the doc do a general blood test?
    What were your magnesium, calcium and potassium levels?

    If you have ME/CFS you should investigate:
    magnesium citrate (or another form) 200mg twice daily
    vitamin B12 sublingual 1000mcg twice daily (or get an injection)
    vitamin D3 5000IU daily
    calcium citrate 500mg daily
    zinc 25 mg daily
    vitamin K2 (or a mix) 200mcg - 800mcg
    Potassium citrate 99mg twice daily

    If you want to you can also try a little taurine to increase the magnesium absorption. Or get magnesium taurinate instead of magnesium citrate.

    This will help to reduce the fatigue, pain and vertigo, and possibly reduce your blood pressure a little and take the pressure out of your calves. You should revisit your doctor in a month and have a general blood test to check on your serum and urine calcium levels are within normal. It may take three months to reduce you BP. The fatigue should reduce in a week.

    The urinary frequency is also a typical symptom of ME/CFS and will not go away but the above should reduce it.

    One other thing to consider. Are you on any acid reduction medications such as omeprazole (a PPI) because these can in some instances reduce magnesium levels significantly.

    [This Message was Edited on 01/29/2013]

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