*must* lie down to feel good; if standing, *must* keep moving by rocking

Discussion in 'Fibromyalgia Main Forum' started by justdifferent, Mar 25, 2012.

  1. justdifferent

    justdifferent New Member

    Hello all,

    I am just starting to investigate the possibility of POTS and have noticed that to feel okay, I have to lie down a good deal of the time or I'm wiped out. If I stand, I will subconsciously rock a bit on my feet; I can't stand still, but not because I'm hyper. I'll tire very easily in this position, and no, my knees are not locked.

    My family is not buying my "I have to lie down" or "I cannot just stand still" statements - because this is Not Normal. I do wish more progress had been made on this disease (CFS/ME) because I have lost my 20s, 30s and now working on my 40s. The simplest task can cause me to gasp for air, and yet my muscles are strong as witnessed by the amount of weight I can move with both my arms and my legs! Sitting at my desk for 8 hours per day is killing me because I can't move enough and I get so tired that the thought of a stroll around is tiring. Weekends I'm either collapsed and recovering *or* living a fairly normal life, but I can never predict which sort of weekend it will be.

    If anyone can relate to the above, please reply....

    PITATOO Member

    I am sure a lot of us can relate. Even though I am 90% better 90% of the time. Standing in one place still kills me. I am also on to blood pressure pills, a beta block and a ace inhibitor. Not sure if that makes it worse but I sure notice it when I stand up to quick.

    I get really upset when my family does not understand or makes smart remarks when I ask them to check out while at a store and I head to the car. I should not bother me after 17+ years but it still does. Even if they make a joke about it it makes me mad.

    Sitting does me in also. But now I am at a new job and can work 75% of the time from my house, so that can mean laptop at desk, in bed, outside at the pool, on the boat or at a coffee house. So I am very lucky that way. Before I worked for myself and had to put up with whatever client said. Last one is a big company that wanted all of us to work from 6am to 6pm with 1/2 hour break for lunch and 2 15 minute breaks. Well I got a call from a new company and left.

    Anyways not sure if it is POTS or just another side of FMS/CFIDS. Your circulation is ok? Checked for PAD? Which would be really rare at your age unless you were diabetic.

    Are you going to be evaluated for POTS? IF so please keep us informed. May help others.