Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

What autonomic websites/forums do you recommend?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Gingergrrl, Oct 22, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,107
    Likes:
    23,258
    USA
    Several people have suggested that I look at forums for autonomic dysfunction and I was wondering which ones you guys recommend? The ones I keep hearing about are "Dinet" and "Pots Place."

    My autonomic symptoms are all over the map from low BP, low blood volume, POTS and IST type tachycardia, shortness of breath and possible microvascular angina. The autonomic issues are by far the most disabling and I was wondering if the autonomic forums include people with ME/CFS or are strictly pure autonomic issues? This is the only forum I belong to and do not have a lot of energy but am thinking it might be worth it to gather more info.

    Thanks in advance for any info.
     
    WillowJ likes this.
  2. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,131
    Likes:
    21,341
    Albuquerque
    Dinet is the forum for POTSplace. Probably most of the members of autonomic forums have a mixed diagnosis (not just dysautonomia)--at least that was my experience when I spent a lot of time on them.

    This is a good site for information and used to be one of the best forums, but the forum has been closed for a while--though the site still has good information.

    Sushi
     
    ahimsa likes this.
  3. lnester7

    lnester7 Seven

    Messages:
    2,337
    Likes:
    3,310
    USA
    Tired of being sick and ahimsa like this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,107
    Likes:
    23,258
    USA
    @Sushi and @lnester7 Thanks for the recommendations and I will look at them later! I really appreciate it.
     
  5. Ruthie24

    Ruthie24 Senior Member

    Messages:
    197
    Likes:
    392
    New Mexico, USA
    DINET has a good forum and also has a good website with a a lot of general information on it. There is a mix of people on there who have POTS along with other things like ME/CFS. You can search the forum for some great discussions on a variety of issues.
     
    CantThink and Gingergrrl like this.
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,107
    Likes:
    23,258
    USA
    Thanks @Ruthie24 and that is one of the websites that I plan to look at soon. Also, it is great to see you back on the board!
     
  7. xks201

    xks201 Senior Member

    Messages:
    713
    Likes:
    286
    What is your blood pressure and pulse?
     
  8. Kina

    Kina

    Messages:
    10,128
    Likes:
    17,226
    Sofa, UK
    What does that matter, she asked for some recommendations for websites?
     
    Gingergrrl likes this.
  9. xks201

    xks201 Senior Member

    Messages:
    713
    Likes:
    286
    Gee I don't know maybe because she is on a chronic fatigue forum where we talk about ortho static intolerance and fatigue and she is seeking information from other members on an ortho static intolerance forum.
     
  10. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    lnester7 likes this.
  11. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    Whats wrong with that?

    Maybe you should compare her likes to yours and adjust accordingly,no?
     
    Revel likes this.
  12. xks201

    xks201 Senior Member

    Messages:
    713
    Likes:
    286
    If you read the whole thread you will realize that I was asked the question of why am I asking her questions. Your post is exactly why I asked her those questions. In short, there was nothing wrong with me attempting to compare but the moderator thought so because I didn't simply redirect her to some website. Long live irony.
     

See more popular forum discussions.

Share This Page