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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Autonomic or ...weird symptom

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Quirky, Mar 14, 2013.

  1. Quirky

    Quirky

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    Very hard to explain. Its a wave of what feels as dysfunctional ion channels or cellular, feels horrible, in the whole body, unable to stand, turn pale, unable to do anythying whilst it lasts. Its not as if you are fainting, uncomfortable sensation in the body, not muscle, not bones, not organs...can't quite explain. I suffer no panic attacks, no depression and take no meds. I have not had this symptom for a few years, then, suddenly, it reappeared, along with other symptoms.

    Many thanks for your input.:thumbsup:
  2. lnester7

    lnester7 Seven

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    I saw your chat and I see much of you in me.I thought I was the only one that had to be careful not to pass out during a bowel movement:aghhh: .
    I used to go paralyzed a lot due to weakness and feeling like you describe, I am on midodrine and florinef for OI. It has taken all that away (except when I skip to many times the meds). You should look into OI, EVEN when the TTT is negative.
  3. SickOfSickness

    SickOfSickness Senior Member

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    How long does a wave last for you? How often do you have them? I have some kind of wave that I hate which I think matches your description. Mine are very brief.
  4. lnester7

    lnester7 Seven

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    Ahh I remember now the Doctor called it presyncope.
    ahimsa likes this.
  5. Quirky

    Quirky

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    Thanks, I will look up OI and EVEN. I didn't do the TTT, too ill for this. Do you at times feel as if you are passing out, hot and sweaty, and weak?
  6. Quirky

    Quirky

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    Hi -- waves come and go, does not last long, but the uncomfortable feeling of feeling unwell can last sometimes an hour. The waves comes on for a few minutes.
  7. lnester7

    lnester7 Seven

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    Yes the about to pass out is presyncope. I do not get hot nor sweaty. I get cold like shivering and I NEVER sweat. I have sudomotor issues, but w OI some people don't sweat some sweat too much.
    ahimsa likes this.
  8. Quirky

    Quirky

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    Pre syncope simply means before fainting...What is OI???
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Quirky

    OI is orthostatic intolerance. You do not tolerate standing.

    Sushi
  10. Marco

    Marco Old blackguard

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    Near Cognac, France
  11. Shell

    Shell Senior Member

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    I get this with standing up. Not all the time but it comes in waves. My GP says is pre-syncope and I know it's related to OI. It is utterly yuk and completely random for me. Sometimes I can be standing and only get tacky (120+) and sometimes this blacking out and lose of hearing happens. Not fainted yet thankfully.
    ahimsa likes this.
  12. SOC

    SOC Moderator and Senior Member

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    I used to get like that. For me, it appears to be related to exceeding my anaerobic threshold (which I can do just by standing too long) and low blood volume. It's mostly the low blood volume, I think.

    Fluid loading (3-4 litres of electrolyte drink daily) and fludrocortisone (Florinef) have helped me quite a bit. And pacing, of course. :)

    Have you seen this article here at PR? http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing
    ahimsa likes this.

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