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I Have Idiopathic Edema

A Idiopathic Edema anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Idiopathic Edema. You're not alone. 22 People

    Idiopathic Edema

    I've been dealing with this for approximately 2 1/2 years now. I can't take it anymore. I've had up to 35 lbs of extra fluid on me and doctors just don't care, tell me to deal with it. I cannot and will not go on like this. Does anyone have any stories of what's helped?
    mrg214 mrg214 31-35, F 1 Response Sep 25, 2012

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    Just Don't Know

    Well, i'm 16 i've had this since i was about seven. Back then the doctor thought i was allergic to dog hair, and then milk, and then sea food. but, i know my body and i knew it wasn't any of these.  I went to lubbock tx hospital and met a doctor that said it was idio edema. she...
    kattie13 kattie13 16-17, F 1 Response Jan 20, 2012

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    I, too, had all the "normal" kidney,

    liver, heart, lung & thyroid function. Five different doctors had no idea what it was and merely suggested compression garments and low sodium diet. I am not overweight, not diabetic, and not depressed/anxious either. As a result of the edema, my legs began to cramp when I...
    ldrakecole ldrakecole 46-50, F 1 Response Dec 11, 2013

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    Hi!! I am new here and not sure how this works!

    !! I'm looking for anyone who can tell me any kind of treatment that works for idiopathic edema!!! Any help is welcome!!!!
    carlalynnrn carlalynnrn 36-40, F 1 Response Dec 11, 2014

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    Stupid Edema!

    Has been bothering me for awhile.  I was trying to decide if I was really that fat or if it was swelling.  When I work I wear special socks for my plantar fasciitis.  When I wear those socks from the ankle down my feet are totally normal.  When I don't wear them my feet puff...
    katnipkitkat katnipkitkat 41-45, F Jul 26, 2011

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    I have an answer!!! I have a new diagnosis

    as of yesterday and I wanted to share in case someone else has the same thing. Last year I was sitting down studying and my hands and feet swelled up within a matter of seconds and I started having heart palpitations. I went to the emergency room and was told absolutely nothing...
    Ash1zzle Ash1zzle 26-30, F Jan 12

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    I Am The Stay Puff Marshmallow Girl....

    It's been between 15-20 years since I started to suffer from Idiopathic Edema. I was sent to Endocrinologists first, who miss diagnosed me with Polycystic Ovary Syndrome - I was sent to Nephrologists who started out with 24 hour urine testing, blood work, and stating that I had...
    Sabrina41 Sabrina41 41-45 9 Responses Apr 1, 2011

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    Alive And Swollen

    I am 43 years old and was diagnosed with breast cancer this time last year.  I went throught chemo and radiation which were completed in May.  A few months ago I started putting on weight and swelling.  My kidneys, liver and heart are all ok.  Most of my...
    burkewife burkewife 41-45, F 3 Responses Oct 7, 2009

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    I don't think I can take anymore.

    I thought this situation had been fixed but it hasn't. I'm bigger then I have been and gained 3lbs while sleeping. I can't live like this!! So ready to start my new med next week! I feel so alone! I feel my hubby hates our life and is so tired of me being sick. I feel that I...
    carlalynnrn carlalynnrn 36-40, F Aug 12, 2015

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    I have lost more babies

    than I can even count now. Twenty-two (yes 22!) babies have lived in my womb and have died. Each and every one of them have taken a toll on my heart, my marriage, our finances, and our lives. I want nothing more than to find a cure for this issue and give my husband a baby...
    CassiKaehn CassiKaehn 46-50 3 Responses Feb 14, 2014

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    Anyone In The Northeast US With A Good Dr That Treats Idiopathic Edema

    i can't find any good docs. i live in pennsylvania. at this point, i'll go anywhere to see a doc!
    mrg214 mrg214 31-35, F 4 Responses May 15, 2013

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    Idiopathic Edema

    It has been a year and a half since I was diagnosed with ideopathic Edema. It is troubling because I get swelling on my lips, face and head. I started taking Benedryl to help the swelling to go down. After I while I thought that it disappeared and I was wrong. Now I take an...
    CurtisPhillips CurtisPhillips 51-55, M 1 Response Jun 9, 2013

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    I have had problems with swelling

    for a long time but it really became a problem in 2003. I have herniated discs in my neck from an accident and the fluid from the disorder, of Idiopathic Edema. I saw Dr. Jerome Check (referred from a lifetime friend of my Pain doc at the time) because he is a fantastic...
    Eiscorp Eiscorp 56-60, F May 31, 2015

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