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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

    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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    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

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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

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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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    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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    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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    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 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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    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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    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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    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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    Related Experiences

    Ok. Maybe not totally yet, but I did get to the root of some of my anger issues with my job. I schedule transportation for people who need rides to medical appointments. Many of...
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    I'm 22 and I got my DUI in June this year. I'd already started developing a drinking problem prior to this so I should've known it was coming. I would buy bottles of liquor to...
    biggs346 biggs346 22-25, F 1 Response 58 mins ago

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    So I was diagnosed with herpes in November 2013 through blood testing. Today I spent that day with my first love and we had a make out session but he doesn't know that I have this...
    luethel luethel 22-25, F 1 hr ago

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    For people who have never been in pain and don't understand always assume those with narcotics are addicts. This is a gross misunderstanding! Real addicts are those who took...
    JadeKnight JadeKnight 26-30, T 1 hr ago

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    my neck hurts so much, I've been told its very stiff latley. I have been under a lot of stress with other health issues that have been getting me down so much. It feels so painful...
    BabyNeko BabyNeko 18-21, F 1 hr ago

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    I have a list, it includes, places to see and people to meet. Life is short and regrets have no place in the life I want!
    kangaroo1964 kangaroo1964 51-55, M 1 hr ago

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    I always thought kids were annoying, but lately I have been noticing all my friends having babies, and talking to children makes me realise how interesting and funny they can be. I...
    geminidreamer4 geminidreamer4 18-21, F 1 Response 2 hrs ago

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    tomorrow night I get to see my love. He has been out of town for the past couple of days and it has taken its toll on my attitude. I just hate when I have to be away from him and...
    alwaysotk10 alwaysotk10 31-35, F 2 hrs ago

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    I had a panic attack over my stupid f***ing phone bill... I just started my first week of college so I had to buy text books... I assumed that what I didn't pay I could just pay at...
    InsaneSusy InsaneSusy 18-21, F 1 Response 2 hrs ago

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    I really am glad to say that I admire men and women who have self respect. It is almost one of the worse things to see is older people acting young. I admire seeing older people...
    Babeondwy Babeondwy 41-45, F 2 hrs ago

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    Forgive me for being so winded but this is the first time I've reAlly talked about this:My daughter was born at 30 weeks due to a placental abruption. I had to have a crash C...
    Ashley3085 Ashley3085 26-30, F 2 hrs ago

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    Been a long time, I haven't write anything here. Haha. How's everyone? :D
    JustOrdinaryGirl JustOrdinaryGirl 18-21, F 1 Response 2 hrs ago

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    I have a bunch but being told "no" is a pet peeve that has caused me many confrontations in my life. I've been called spoiled, bratty, etc but I honestly don't feel I am. Even as a...
    AmayaHoo AmayaHoo 22-25, F 3 hrs ago

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    Happiness doesn't last longer. Does it ? It doesn't even last for 24 hours. I almost planned everything. Gosh, how quickly it shattered into pieces and I couldn't even get to...
    dezeena dezeena 26-30, F 3 Responses 3 hrs ago

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    My boyfriend just sent me a letter asking me to send him a charger portable? I think he means a portable phone charger. I'm not sure though. If he needs it I don't want to wait for...
    StephyP13 StephyP13 18-21 3 hrs ago

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    every since i met my MIL 14 years ago I have has mother son fantasies, i used to go take care of things around her house for when we was away and i would look through her drawers...
    jamesdickson427 jamesdickson427 36-40, M 3 hrs ago

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    I just have to rant again. One more time and then I'll stop. THIS WEEKEND IS A FOOD NIGHTMARE FOR ME!!!!!!! Ok. Done now.
    Robinzasio Robinzasio 41-45, F 3 hrs ago

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    Transitioned out in 2006 but this was way before most women and girls made a thing about it. I guess I just liked the way my hair looked natural versus permed, but I just have noo...
    Lov3intheasylum Lov3intheasylum 31-35, F 1 Response 3 hrs ago

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    We all have. I liked to think as each and every person that I'd lost in my life as a 'purposeful' loss - one that had meaning, one that was determined by fate and had pushed me...
    littlelostfox littlelostfox 22-25, F 4 hrs ago

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    just found out my boyfriends parents have his address and don't want to give it to me. and that his mom thought I was trying to get pregnant so he wouldn't leave... and that...
    etrigo etrigo 16-17, F 4 hrs ago

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    Those nights, when you have had a long day and you're tired physically, yet you can't sleep :(
    kasiyat kasiyat 26-30, F 1 Response 4 hrs ago

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    The list start to become long, never actually counted. Planned to by a world map and put needles in each place I have been to.
    Granitvbg Granitvbg 41-45, M 2 Responses 4 hrs ago

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    I found out my father has gout. The doctor said it was from eating too much red meat and to rich of foods. I love my steaks also but now I know I need to switch from them to...
    michaelian49 michaelian49 26-30, M 4 hrs ago

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    Well, I am going to be starting gym soon. It is something that I feel will boost my self esteem a whole lot. I am not uncomfortable with how I look, but I do have some days where I...
    DaisyDuke101 DaisyDuke101 22-25, F 2 Responses 4 hrs ago

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    H e l l o all! My name is Rayvenn and I am a 24year old new mother to an angel baby. Here is our experience. I had met my soul mate November 2006. He had asked me to be his...
    ArianaAurorasMama15 ArianaAurorasMama15 22-25, F 4 hrs ago

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    My boyfriend lies to me all the time I don't know what to do, I don't feel like I can trust him anymore. A lot of people have let me down before, I want just one good person in my...
    darkparadise95 darkparadise95 18-21, F 7 Responses 4 hrs ago

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    I have a crush on a guy who works in the same plaza but a different store and I hate it! I hate it more than anything. This is the first time I've had a crush on a guy since high...
    creaturefromanothertime creaturefromanothertime 22-25, F 2 Responses 4 hrs ago

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    I miss writing and updating my blog. Just, I can't mix my studies with it so too busy, but surely I'll get back to it at break. There's just too many things on my mind that I wanna...
    Jaisz Jaisz 22-25, F 4 hrs ago

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    i have been to Africa mexico Nicaragua and Australia
    Sheslikethewind Sheslikethewind 16-17, F 3 Responses 4 hrs ago

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