Site to listen to about CFS/FM Dysautonomia

Discussion in 'Fibromyalgia Main Forum' started by Sophiaz, Feb 16, 2009.

  1. Sophiaz

    Sophiaz New Member

    Just want to bring the voice of Dysautonomia to the air! all are welcome to listen and ask questions to me in the chat (Provided folks can FIND the chat!)

    I am selling NOTHING, no agenda except tips I have to stay sane after 19 years of this. And keeping a since of humor. No drama queens...I will play some fun songs to give myself a break (talking IS tiring)

    and if you want to ask what foods to help or avoid, type in chat. If chat does not work I will give out an email to send me a note.

    I promise no selling and I will not talk about past life therapy to "fix our hypothalamus"..will keep my mouth shut on that subject though some doctor rambled on about that on a show yesterday.

    It's free (except for some adds on the page and maybe an add at the beginning of the show)
    if you have problems LISTENING hit the refresh button ...Firefox seems to work best and updated flash and all that junk.

    Hope to see you there. So many of you have similar issues and ask great questions that my fingers can't respond to all.

    EVERYBODY has a story that has this illness. I want to hear from YOU!
  2. sweetbeatlvr

    sweetbeatlvr New Member

    thanks for the link. i tried to go and check it out, but it did not play for me, i'll go back and try again later.

    i've been diagnosed w/ FM.

    through my research on trying to find out what is causing certain symptoms, i keep running into "Dysautonomia", and i wonder if this may be what's going on w/ me.

    at my last doctor's visit, i brought up the symptoms i've been having lately: periods of being awoke during the night with a racy heart, followed by extreme sweating. moments during the day where my heart will start pounding out of nowhere, followed by the sweating. times when this happens, i feel like i am going to faint and have to drop to my knees to feel balanced again.

    she gave me a 24 hr holter moniter, but nothing showed up on it. of course, i did not have any episodes of this during that 24 hrs.

    can it still be dysautonomia if it does not happen every day?

    could it still be dysautonomia if my primary symptom is pain (in the muscles mostly)?

    i'm thinking about bringing up the possibilty of this to her at my next appt, and would like to have more info on it.

    thanks again for the link, i will definately try and look at it later.
  3. Sophiaz

    Sophiaz New Member

    You are NOT alone since the BTR upgrade which made things DOWNGRADED!

    you do need updated FLASH player (which we all have just need latest one for some online listening shows)

    feel free to email also before the show to TELL them your problems, your operating system and browsers..they are nice about trying to help out.
  4. Sophiaz

    Sophiaz New Member

    before my show at 10pm..those of you new to listening to online radio, might want to sign up at blogtalkradio and surf by some other shows to see how the player works..and IF you have sound.

    Make sure your sound is on and not muted..there are lots of shows on scads of topics on BTR and this way you can see if you can hear or not. If not send email to with specific complaints AND tell them if you are on a PC or MAC, your OS and your browers.

    Also if you have Firefox, that helps and If you have AD BLOCKER, it will sometimes cause you to click on the player more than once. Sometimes a pop up add sneaks in or a pop up white box or "buffering" for about 15 seconds on the player.

    WHen you go to any show page you MUST TURN ON the PLAYER. The shows do not automatically TURN ON unless they are a pay show (person pays to have a show, few do, most of us can't afford that and it's free!)

    So remember to turn On the players.

    ALso you have to hunt for chat sometimes, sometimes it's there when the shows open (I know, sounds convoluted)

    but its a FREE SERVICE and has shows on EVERYTHING from religion, politics, animals to music, to celebrity interviews, to marketing ideas, to health issues.

    Hope you can hear the show tonight.

    if you go to now, click on "On Air" hosts to listen to at that time, and see if you have volume. And if not, email

    [This Message was Edited on 02/16/2009]
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    It should be noted that a person can have Dysautonomia and CFS.

    I have had dysautonomia since I was five. I would faint when sudden / severe stress, such as stubbing my toe. And my faints were so bad that I would have a seizure. It did not keep me from being active, gymnastics, canoeing, running a business, doing home projects, etc.

    But as I got into my 40s, one year, I either had a virus that kept coming and going or many different viruses. I spent about 1/4 of that year, off and on, with cold symptoms. Then I started developing what appeared to be female hormone problems. And fatigue gradually started creeping in. Then, in one day, I plummeted with pain and extreme fatigue.

    Dysautonomia can cause symptoms on its own. But it also can be a weakness that preconditions to the neurological and immune system syndromes of CFS and fibromyalgia.

    All of these involve the hypothalamus. So it should not be surprising that if someone has a dysfunctioning hypothalumus, that age or hormone changes or a stress on the body can cause a further dysfunction.

  6. Sophiaz

    Sophiaz New Member

    yes we can have both..>I had cfs 13 years before the ABILITY to stay upright worsened..thus in my case autonomic problems but for sure people can have both.:)
  7. Sophiaz

    Sophiaz New Member

    In case you missed the show on dysautonomia/cfs/fm check it out.

    Back to doing my normal music shows now, but I had some good tips on finding a new doctor and getting yourself ready mentally. :) among other things.