Question???I just got out of the hospital

Discussion in 'Fibromyalgia Main Forum' started by sapphire, Dec 7, 2002.

  1. sapphire

    sapphire New Member

    I just got home after spending 2 nights in the hospital. I have a question. Has anyone ever had their blood pressure and heart rate go up when you are standing or even sitting? This has the Drs. baffled.
    When I was lying down it was normal then they would sit me up and it would elevate. Then when I would stand up it would go even higher. Then I would lay back down and it would be normal.
    Yesterday, they were going to send me home and stood me up and I passed out. Needless to say, I didn't get to go home.
    Anyway, I'm also having a lot of neurological problems, too. I also have extreme weakness in my right leg. I could barely walk yesterday but it's better today.
    The only thing I do know is that it's not heart related. I'm really glad about that. They think it may be MS. I had an mri done of the brain and it was clear. They are going to do an mri of the spine next week.
    One thing I'm sure of, is that I have more going on than the CFS/FM. If they can't find out here they want to send me to Mayo Clinic.
    If anyone has ever heard of this happening, please let me know.
    Thank you all just for being here and listening. Sorry it's so long.

    Sapphire
    [This Message was Edited on 12/07/2002]
  2. sapphire

    sapphire New Member

    I just got home after spending 2 nights in the hospital. I have a question. Has anyone ever had their blood pressure and heart rate go up when you are standing or even sitting? This has the Drs. baffled.
    When I was lying down it was normal then they would sit me up and it would elevate. Then when I would stand up it would go even higher. Then I would lay back down and it would be normal.
    Yesterday, they were going to send me home and stood me up and I passed out. Needless to say, I didn't get to go home.
    Anyway, I'm also having a lot of neurological problems, too. I also have extreme weakness in my right leg. I could barely walk yesterday but it's better today.
    The only thing I do know is that it's not heart related. I'm really glad about that. They think it may be MS. I had an mri done of the brain and it was clear. They are going to do an mri of the spine next week.
    One thing I'm sure of, is that I have more going on than the CFS/FM. If they can't find out here they want to send me to Mayo Clinic.
    If anyone has ever heard of this happening, please let me know.
    Thank you all just for being here and listening. Sorry it's so long.

    Sapphire
    [This Message was Edited on 12/07/2002]
  3. Carlacat

    Carlacat New Member

    That happens to me also. I have undergone ekgs,echocardigrams and other heart tests and it was never found. I ended up going to Cleveland Clinic where they did other tests such as tilt table test and blood volume test and found out I have POTS. What tests did they do on you for your heart for them to say it was not your heart?
  4. sapphire

    sapphire New Member

    Hi Carla,
    I'm not sure what all they did but they did several ekgs and an echo of the heart. All kinds of blood work and I wore a monitor the whole time I was in the hospital.
    Can you explain POTS? What is the treatment?
    My Dr. also mentioned going to Cleveland Clinic.
    Thanks for answering. I'll try to do some research and see what I can find out.

    Sapphire
  5. Carlacat

    Carlacat New Member

    I wore a monitor also and it showed normal. If you go to potsplace dot com you can learn all about it. Where do you live? I live 4 hrs from Cleveland in WV.
  6. sapphire

    sapphire New Member

    I went to that site and it sure does sound like me.
    She put me on a beta blocker and it helps tremendously.
    Do you have weakness in your legs also?
    Thanks for helping me out. I realize after reading about this that my Dr. is testing me for this. She just didn't tell me what she's looking for. She is very thorough. She is one of the few Drs that I feel good about.

    Thanks again,
    Sapphire

    P.S. I forgot to tell you that I live in Kentucky. I'm about 10 hours away from Cleveland.[This Message was Edited on 12/07/2002]
  7. Carlacat

    Carlacat New Member

    Yes I found that site very informative. What Beta Blocker did they put you on? I just started taking Lopressor today so I should start telling a difference sometime soon. Take Care. Feel free to email me harrymac1@charter.net
  8. BonBons

    BonBons New Member

    I just read an article here about "structural or positional hypotension". Sorry I can't remember who wrote it but he basically said that many CFIDS/FMS patients have this phenomena of HBP elevating with position. Try a search for CFS and Social Security Disability. It is an older article but has good information. Glad you're home. BonBons
  9. sapphire

    sapphire New Member

    Thanks BonBons.
    I will try to find the article.

    Carla,
    I will email you.
    I'm supposed to talk to the Cardiologist today. I just hope she can tell me something. I can be up now for a few minutes and then I start feeling really bad. I still have a slight limp but that is alot better than it was.

    Sapphire
  10. sapphire

    sapphire New Member

    I did see your post about the book. I find that very interesting.
    I had a liver biopsy in July and it showed something autoimmune but of course they could never tell me what it is. You know, speaking of autoimmune, I know at least 3 people with CFS and they've had it for years. Each one of them has now been diagnosed with Lupus. I find that very interesting.
    I'm just so tired of this as I'm sure everyone else is, too. Right now, I can only be up for about 5 to 10 minutes before I get very lightheaded. I just really want an answer and I called today to make an appointment with the Neuro that saw me in the hospital and I can't get in till Jan.7. I have no idea what the tests showed or anything. My husband is really upset about that, too.
    Sorry for the vent. I'm just really frustrated right now.
    Thanks Jelly.

    Sapphire