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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. 21 People

    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 Dec 11, 2014

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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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    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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    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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    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 8 Responses Apr 1, 2011

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    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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    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

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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 41-45 4 Responses Feb 14, 2014

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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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    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, 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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    awesomeguy3125 awesomeguy3125 26-30, M 1 Response 1 hr ago

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    Hi everybody! I'm a male, 20 years old, and my feet are very small for a man, nearly 240 mm (sorry for the measure, I'm italian), 5,5 US. However, i don't bother that, it's a joke...
    FrancescoD FrancescoD 18-21, M 1 hr ago

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    I personally feel as though this needs to be said. Please do not demean those with clinical anxiety by claiming that you, too, have anxiety. As human beings, we all experience...
    Blizzardpaw Blizzardpaw 16-17, F 1 Response 2 hrs ago

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    I have anxiety and am not afraid to admit it in case my life depends on it. I have always been sort of anti social. But ever so recently anxiety has kicked in making life difficult...
    SmileyFaceJenn SmileyFaceJenn 18-21, F 3 hrs ago

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    I would love to own a little coffee shop where people could sit and relax, drink my coffee, have pasteries and goodies and shoot the breeze in a relaxed comfortable place. Id...
    smilesarefree smilesarefree 51-55, M 3 hrs ago

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    PLEASE READ! I have just started a charity. I am 17 years old, and this is my story: I was born with a heart condition called Aortic stenosis, which is narrowing of the exit of the...
    amylouexoh amylouexoh 16-17, F 3 hrs ago

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    I just recently had the surgery done and I can't sit up straight or put my shoulders back because it hurts. the doctor said that I need to otherwise I will be hunched over and I...
    emmabutler12 emmabutler12 13-15, F 4 hrs ago

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    SRI'S - well I have had one experience in my life where I was given anti depressant by mistake a time. I had gone to the pharmacy that day and locally over here , sometimes we...
    Stephenrko Stephenrko 36-40, M 1 Response 4 hrs ago

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    I was just recently diagnosed with schizoaffective disorder along with OCD, generalized anxiety disorder, and PTSD....I've kept silent about my issues my whole life due to things...
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    Today I cut all ties with my family . I have learned of things that were said that were unforgiveable. I have always been very close to my family but now feel they are not who I...
    Dancemomisme Dancemomisme 46-50, F 14 Responses 6 hrs ago

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    It should be a crime to have kids if you have a family history of this disease. Around age 39 I contracted Epstein Barr virus which triggered SLE. My quality of life is very...
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    AphroditeComplex AphroditeComplex 22-25, F 3 Responses 7 hrs ago

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    Especially those who have gone through difficult times and have read lots of 'self-help', 'super positive' books and have swallowed the pamphlet and therefore, lose empathy with...
    usernameinneed usernameinneed 26-30, M 8 hrs ago

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    As some of you may know, I am a published author. I work from my home; therefore, I must practice time management. I also have Bi-Polar I and Severe Anxiety Disorders. Through a...
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    I can't wait until I move out in 3 weeks. Won't have people watching what I'm eating all the time, or have to worry about someone hearing me in the bathroom if I purge. I can do...
    itssmee itssmee 22-25, F 1 Response 10 hrs ago

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    I have kids, but I would like to have more in a future relationship. I <3 being a dad.
    flawl3ssvictory flawl3ssvictory 31-35, M 11 hrs ago

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    My best friend is female. She and I have been best friends since Kindergarten. Things have never been weird between us. we have always been there for each other. she's dated guys...
    xtremside xtremside 36-40, M 1 Response 11 hrs ago

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    I've always been a fan of playstation. I have a PS vita too. For PS4 multiplayer gaming, I have GTA 5, Littlebigplanet 3, nba 2k15, call of duty advanced warfare. I don't really...
    Zaxel Zaxel 18-21, M 11 hrs ago

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    Ultimate embarrassment!? A friend of my brother's was into rock music. Had his headphones on with the music loud. Alone in his room, lay on his bed, thought he'd have a little DIY...
    PeterSp8 PeterSp8 41-45, M 2 Responses 11 hrs ago

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    I have it as finally had a version work on Windows. It is just if any decent want to talk through. I will give the nickname to them after getting to know them as well here.
    Egyptianguy34 Egyptianguy34 36-40, M 12 hrs ago

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    if u wanna see me I have pics in my album but private so add me x)
    Jibeisan Jibeisan 18-21, F 1 Response 12 hrs ago

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    I ******* hate it all I do is work and school. I have only one friend
    Waqasauce01 Waqasauce01 18-21, M 12 hrs ago

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    I am so lost. I unfortunately don't have any real friends I can turn to. I am in a situation of potential life destruction. Not sure how to hang in there anymore.
    samgirl1029 samgirl1029 41-45, F 51 Responses 12 hrs ago

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    It irks me that my friends go to the hospital for everything . They are not rich and I guess they think because help insurance covers most of the payment that the little money they...
    Alylovespuppies Alylovespuppies 18-21, F 2 Responses 12 hrs ago

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    So I decided to share my story with you all, because I can't find a solution anymore... I'm sorry for my bad english. I'm almost 18 years old, my boyfriend is 19 years old. We...
    1brokenwing 1brokenwing 16-17 1 Response 13 hrs ago

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    I have many times! I've never been as smart as my twin and my uncle use to say he got all the good genes and I got the leftovers! My older brother heard him say that and punched...
    lovewins2123 lovewins2123 18-21, M 1 Response 13 hrs ago

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    i think sometimes i was better not knowing i had all these -isms. i am tired of feeling broken and not worthy. i have to talk myself up every day sometimes hundreds of times a day...
    LITVET LITVET 41-45, F 14 hrs ago

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    Words are all I have ... Your the reason I feel so aliveThankyou Hypnotia :) XXXX
    mintybear2 mintybear2 46-50, F 1 Response 14 hrs ago

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