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Lessons from ME/CFS: Finding Meaning in the Suffering
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Timing of OI?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by LiveAgain, Feb 15, 2012.

  1. LiveAgain

    LiveAgain

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    For those with CFS and OI - did everything come at the same time or were you sick with other symptoms first and then OI appeared? I had many symptoms for years, but noticable tachycardia (diagnosed POTS) did not appear until several years in. I don't know if I developed POTS on top of CFS. Or is POTS is part of CFS. Or if it was always POTS and not CFS. Any input is appreciated.

    Naomi
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I had symptoms of OI all my life--way before the main ME/CFS symptoms came. But when they did come, the OI got much worse. I think it is definitely part of the syndrome for a subset--as is POTS.

    As my other symptoms get better, my OI gets better too--even on a day to day basis.

    Best,
    Sushi
  3. lnester7

    lnester7 Seven

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    I would love to know myself for sure. I think I got sick first then OI started 3 years later.
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I had CFS for 20 years. No OI. Then three years ago I had POTS come suddenly. A complete breakdown of my Autonomic Nervous System. A nightmare. My POTS is caused by Autonomic Neuropathy. There are many reasons POTS starts.

    I have my CFS under control but now I am fighting my POTS. I am improving thankfully. Supplements and my integrative MD's.

    OI happens with MANY illnesses including CFS
  5. Valentijn

    Valentijn Activity Level: 3

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    I think I've had NMH episodes starting when I was 12, but they were very rare and of short duration. A few months after ME hit me hard last year, the NMH steadily got worse, and it is now much more disabling than my PEM/PENE.
  6. ahimsa

    ahimsa Senior Member

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    I had no issues at all with NMH (one type of OI) before I got sick in 1990 (post-viral onset).

    My initial symptoms were definitely related to NMH - dizziness, nausea, suddenly needing to sit down, and feeling short of breath, especially when climbing a flight stairs. This was a huge contrast to my previous ability to do 45 minutes on the stairmaster at level 8 or 9, hike on steep trails, and so on. I also had heat intolerance.

    I'm not sure whether anyone knows *for sure* but autonomic symptoms are listed in at least two different ME/CFS criteria, the Canadian Consensus document and the International ME document (sorry, I don't remember their full official names, nor do I have a link right now). But I think the current belief is that orthostatic intolerance is a common in ME/CFS patients, or at least in a sub-group of patients.
  7. ramakentesh

    ramakentesh Senior Member

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    I always wonder whether the years of general tiredness and fatigue I experienced before the sudden onset of POTS was just POTS being there subclinically?? Im just guesing though as I have no idea. I know that I could live with the fatigue but POTS is quite disabling at times and also very uncomfortable.
  8. ukxmrv

    ukxmrv Senior Member

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    my symptoms started together and I had no signs of blood pressure problems before I got sick (acute viral onset).
  9. taniaaust1

    taniaaust1 Senior Member

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    I had very low BP as a child and teen (before I got ME), I used to almost faint if I stood up suddenly.

    I thou didnt have POTS when I first got ME, it came in later.

    I can also go more POTY as a post excertional symptom too which can make the POTS symptoms be kicking me about even more not just on standing, but also hitting more the next day after exercise. eg first wave of POTS stuff on exercise and standing..then a delayed POTS reaction next day. I only just recently noticed the delayed POTS as a ME symptom.
  10. fla

    fla Senior Member

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    POTS appeared after my M.E. progressed and became more severe. Hard to say it wasn't there mildly at the onset of M.E. but just wasn't noticeable.
  11. LiveAgain

    LiveAgain

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    Oops, let me not call it CFS. So, if I've calculated correctly most of us got the POTS symptoms with or after M.E. which would lead me to believe that the autonomic symptoms are a part of M.E. or can manifest later as a progression of M.E.. But then I can't explain the people who had POTS first. Anyway, since the majority of you said the OI came much later, I feel more confident that my M.E. diagnosis may be correct. If no one had this experience, I would be seriously questioning this. Hope my brain foggy thinking made some sense.
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    My CFS was doing very well and I had started to drive and do regular things again when my POTS started. It doesn't have to come from a progression. I was actually doing great. I think a surgery started it for me. OI and POTS starts for many reasons.
  13. Ocean

    Ocean Senior Member

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    I have been the same as this also.

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