POTS are you unable to work?

Discussion in 'Fibromyalgia Main Forum' started by lenasvn, Apr 18, 2006.

  1. lenasvn

    lenasvn New Member

    Just researching about POTS- it sure seems like I have it.

    Are you with POTS taken seriously by your doctors? It sure seems impossible to do any decent work with this stuff, it seems to be slightly better here and there, but it also seem to get worse sometimes.

    I dread the summer, that's when I get really bad, I can barely stand up even in the shadow, all blood seems to be pooling in my legs, I feel faint and weak in the heat, and my pulse is whoppie-doodeling.

    Have anyone been able to get disability because of POTS?
  2. lenasvn

    lenasvn New Member

    bumping for me :)
  3. suz9601

    suz9601 Member

    I am disabled at 28 and have been since I was 24 due to POTS. My heart rate used to get up to 195 before beta blockers and I would almost pass out. Blood pools in my legs and I get lightheaded all the time. Especially in lines, my blood pressure drops and heart rate soars. I wish I could get rid of POTS, then I woudl be doing much better than I am.

    It makes the CFS/FM and everything else I have worse. Docs dont have a clue what to do other than beta blockers and Flourineff (sp?) Have you taken your pulse when standing? How high does it get?

  4. lenasvn

    lenasvn New Member

    It doesn't go as high as yours, I didn't check during the summer yet either, but it goes to 139 at it's worst. My pulse while laying for 2 minutes is only 60, the same as I had when I WAS athletic. My symptoms are pretty bad, though.

    I have to catch my breath to complete a sentence when it's bad. Does the symptoms seem to come and go in intensity, of course with no relief, but still?

    I get the hypoglycemia thingie common with POTS too, the pulse can drop down to 45, and then I have to lay down and I will fall alseep on the spot. Feels more like a coma, though,,,LOL!

    [This Message was Edited on 04/18/2006]
  5. suz9601

    suz9601 Member

    Yeah I have good days and bad days...but the symptoms are always there. I haven't figured out what makes some days worse than others, maybe hormones ?? Sorry you are dealing w/this too...it isn't much fun. Take care and you might want to try a beta blocker if it gets unbearable...it does help some.
  6. MamaR

    MamaR New Member

    I have been SO out of touch.

    I am so sorry that you are having bad time.

    How are those sweet babies?