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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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  1. Betzee16

    Betzee16

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    Results of my poor man's tilt test...

    108/77 - 68 - lying down
    119/80 - 91 - standing up -12:30
    116/91 - 106 - 12:32
    111/81 - 105 - 12:35
    97/73 - 103 - 12:36
    74/48 - 68 - 12:37 At this point I had to lie down flat or I was going down.

    I stood perfectly still, no fidgeting or talking. Within a minute or two, I was very nauseated, felt pressure on the side of my neck, and palpitations.

    I fainted several times as a child and have always been tired. (I'm 50 now) Sleep does seem to help my tiredness, 10 hours a night feels pretty good but I get about 7 to 8 hours. Naps help but most of the time I can't take naps. I do work a desk job 8 hours/3 days a week and my one foot is always fidgeting.

    Whenever I do stand in church or grocery store, I will get nauseated if I stop walking and know to start fidgeting to control it. But the constant nausea does get to be a pain. I am able to exercise and actually feel better as long as I am constantly moving.

    I did mention this to my doctor who did not think it was the cause of my fatigue but did refer me to a urologist who did some tests and basically told me not to stand up still.

    I did try to up my fluids and salt but it did not seem to help.

    I am going to a new PCP this week but the doctors don't seem to know anything about NMH or POTS.

    Is NMH causing my fatigue or is NMH is happening because I am fatigued? I did have anemia as a child and took iron supplements. Also had it and took iron for about 3 months last year but then my levels were good. I felt no better on them though.
  2. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    I really hate the "F" word (Fatigue). It's is horribly vague. And it is a symptom, something which is caused, not something which causes other symptoms. Hence I think it's safe to say that fatigue cannot cause NMH, whereas NMH can cause symptoms similar to fatigue. However it is possible that something is causing both the NMH and fatigue.

    Your pulse pressure (difference between systolic and diastolic measurements) is very low throughout. 40 is normal, but you start at 31, and go downhill from there. 25 and under is considered extremely low, and is what you see with rather serious medical conditions. And yours gets down to 24 at two points.

    The pressure on your neck is probably from muscles and/or arteries trying to tense enough to maintain blood flow to your brain. When pulse pressure and/or BP drop low enough, you aren't getting enough blood to the brain, which means you aren't getting enough oxygen. This can trigger the tensing, as well as the intense need to lie down immediately. I'd say that what you feel during these episodes is better described as light-headedness or orthostatic intolerance, rather than "fatigue".

    Since you can't lie down during the day, it can help a LOT just to keep your legs elevated. Your workplace should be able to accommodate this without any fuss. Doctors can diagnose NMH with a Tilt Table Test. For NMH the test should last up to an hour, since NMH can be delayed, but yours seems to hit pretty fast.

    Since you are able to exercise, and it is helpful for you (no PEM or crashing?), you probably just have NMH, and not ME/CFS. Hence your condition is probably 100% testable and treatable. There can be different causes of the NMH, so those should be investigated to see what causes yours. Mine seems to be from low norepinephrine, hence taking a very small dose of an NRI, Strattera, three times a day, means that my pulse pressure can stay in a better range.

    If you don't have ME/CFS, then tensing muscles is a great way to help things out a bit. I think there are also specific exercises recommended for various types of Orthostatic Intolerance, which you might be able to find out about elsewhere. There are also compression garments for the legs and/or abdomen which can help to prevent blood from pooling inappropriately, and thus improve blood pressure a bit.
    ahimsa likes this.

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