1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
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...
Discuss the article on the Forums.

Good days/Bad Days

Discussion in 'General Symptoms' started by livingwithcfids, Dec 5, 2011.

  1. livingwithcfids

    livingwithcfids

    Messages:
    75
    Likes:
    7
    It's hard to say this because this illness is so miserable and life altering, but on your good days or your best of days, do you ever feel a slight sense of normalcy? I don't think a day has gone by where I was entirely symptom-free with this illness but I have had days where I have bouts of feeling energetic and good. How is it with you?


    I am not bed-bound but I do have moments in the day where I need to STOP whatever i'm in the middle of doing (usually just sitting on a chair, typing on my laptop) and immediately lie down. The reason for lying down is because "my body" becomes too fatigued and achy to sit upright in a chair!! Like my body just collapses. It's too weak, so it must give in. Can you believe that? I don't think it's related to blood pressure or POTS, can someone help me with this one? Also, anyone know of the largest fibromyalgia forum?
    Much gratitude
  2. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,585
    Likes:
    7,123
    Amersfoort, Netherlands
    I think it sounds very much like neurally mediated hypotension, which is also a form of orthostatic intolerance (though different than POTS). On bad days, after sitting upright for a while, the body has too much difficulty to get enough blood to the brain, therefore there's not enough oxygen either. Laying down improves circulation to the brain, and I usually feel a lot better after half an hour or an hour.

    If you have a blood pressure monitor, your blood pressure and/or pulse pressure are probably quite low when you feel the need to lie down. It might be low enough while you're still sitting upright that your BP monitor can't detect your pulse consistently enough to get a reading, and gives an error message instead.
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,877
    Likes:
    751
    Concord, NH
  4. livingwithcfids

    livingwithcfids

    Messages:
    75
    Likes:
    7
    Lake Tahoe Lyndonville

    What happened to all these people from the 80s outbreaks? I have yet to meet 1 person from those incidents. Have they all died and disappeared?
  5. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,585
    Likes:
    7,123
    Amersfoort, Netherlands
    That question is completely off topic from the original subject of your thread, but I've seen some on the videos of ME/CFS policy type meetings, offering patient commentary.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,414
    Likes:
    4,151
    Sth Australia
    I too can be symptom free and feeling energetic and good, that is only if Im not doing anything as Im slammed by stuff whenever I active, so that symptom free feeling okay thing is very deceptive.

    Im with what Valentjn has said. I suggest to not assume you dont have any BP issues or POTS unless you've been tilt table tested or tested in another way to rule them out. These conditions can make you suddenly feel very flat and weak even if you have been just sitting upright.
  7. livingwithcfids

    livingwithcfids

    Messages:
    75
    Likes:
    7
    wanted to bump

    Sorry, I wanted to bump the thread by adding additional topics to the discussion. Thanks for your responses, Valentijn and taniaaust1 and for not ridiculing me for not having cfs at all because of the short periods of relief I experience.

See more popular forum discussions.

Share This Page