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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. 18 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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    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 41-45, F Dec 11, 2013

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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 3 Responses May 15, 2013

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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 2 Responses Oct 7, 2009

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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 7 Responses Apr 1, 2011

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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 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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    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 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 3 Responses Feb 14

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    Related Experiences

    I am no one to use my situation to my advantage. I don't seek sympathy; I prefer empathy. I don't want people to feel sorry for me; I want people to understand. It makes me angry...
    makefriendswithchaos makefriendswithchaos 18-21 Jul 1

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    When we are assessing ourselves for how IH affects us and when we are communicating it to others it would be helpful to clearly separate and specify four different factors: 1) How...
    HyperZombia HyperZombia 41-45, M 2 days ago

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    I never really paid too much attention to this especially when I was younger. According to my mom I slept all of the time. When I was awake I would disappear and probably just fell...
    linuxnurse linuxnurse 31-35, M 1 Response 3 days ago

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    First off for all of us suffering, I know your pain is very real, and I believe you and I'm praying for you! I stumbled across this blog tonight while doing research on getting...
    Pancreasfighter Pancreasfighter 41-45, F 15 hrs ago

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    Not a lot of people seem to have heard about BDD. I've even had a few psychiatrists and therapists who had not heard of it. To quickly explain it before I really talk about how it...
    SailingwithSparrows SailingwithSparrows 22-25, F 1 Response 4 hrs ago

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    September 2010: Sometime this month, without knowledge, I conceived my second child. I was living in Dodge City, KS with my ex fiancé and his son. We were constantly fighting and...
    Krissysheart Krissysheart 22-25, F 2 Responses 12 hrs ago

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    It all started when I got really bad pains in my joints every day it was a new pain somewhere else. To be honest everyone thought I was crazy I knew something was wrong. So a few...
    HannahdawnK HannahdawnK 18-21, F 1 Response 11 hrs ago

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    I don't quite know where to begin. I am feeling that there is absolutely no point in being so close to anybody anymore. It just hurts too much when they are gone. I have lost...
    SteelPearl SteelPearl 46-50, F 1 Response 9 hrs ago

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    Me too., i have terrible memories of school .. I feel i missed a lot of my education dealing with bullies n meanies that i couldnt comcentrate on my studied. I was made to feel...
    Janeysunshine Janeysunshine 36-40, F 2 Responses 5 hrs ago

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    I am Lisa new here. I don't know how to describe myself. I am a sentimental but optimistic girl. I feel so lone and helpless when I was told that I had affected with herpes.I have...
    herpesltr herpesltr 31-35 1 Response 12 hrs ago

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    It is a friend with benefits rather than multiple like the title suggests. I have never done it before. Probably wouldn't do it again. But now I feel trapped and I think he does...
    starflower1 starflower1 26-30, F 2 Responses 12 hrs ago

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    Welp so it looks like I'm the first post here. *takes a deep breath* okay, so my mom who is now 37 years old is a drug addict, more specifically meth, speed, heroine and whatever...
    Cryingsmile Cryingsmile 16-17, T 2 Responses 11 hrs ago

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    Okay this is something sorta crazy I know. Back when I was 13 I was raped on my way home from school and I didn't tell anyone and it broke me and ripped me apart still today I...
    Finniees Finniees 16-17, F 10 hrs ago

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    I am repulsed by them. I have encountered many and our personalities don't mesh. I try to tolerate them but sometimes I feel we speak in different language and live in a different...
    Susana1985 Susana1985 26-30, F 1 Response 9 hrs ago

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    After 21 years of marriage, my wife wanted me to take another woman out to dinner and a movie. She said, “I love you, but I know this other woman loves you and would love to...
    sapphire601 sapphire601 31-35, F 9 hrs ago

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    I don't know why but ever since i was little i have peeled my skin and its only gotten worse over the years. I want help with it but i don't know if anyone can help me. Right now i...
    Caitlinsmith1636 Caitlinsmith1636 18-21, F 3 Responses 8 hrs ago

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    A couple of nights ago, I woke up from a deep sleep and had a weird epiphany about myself. I've always really enjoyed taking and being in pictures, but as of late, I've really...
    ohjoyousone ohjoyousone 26-30, F 5 hrs ago

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    I just want to have some fun. the rules are simple: 1. keep this clean. 2. respect others religious beliefs. 3. have fun. this is a learning argument. keep it light!! if you feel...
    DracovNasser DracovNasser 18-21, M 1 Response 5 hrs ago

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    I've been cooking up a storm -- since I no longer have jet lag. I've been cooking a lot of steak, and that is quite unusual because I'm not a big beef-eater. I made fajitas with...
    aepteewS aepteewS 41-45, F 2 Responses 4 hrs ago

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    I don't enjoy the career path I chose. I'm not that good at it either. I'm 32 and have no clue what to do with myself. 3 years ago I started college. My plan was to get an...
    Roxvox Roxvox 31-35, F 2 Responses 2 hrs ago

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    And I'm bipolar with ADHD and Psychosis. I take meds and I feel pretty good but I notice that my mood swings now are circumstantial. I find it difficult to cope with life. My...
    Roxvox Roxvox 31-35, F 1 Response 1 hr ago

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    I've been injured since April 2, 2014. I smash my left index finger. Got let go the same day. I became jobless and things started to go down hill. Several doctors check only my...
    rukifuiai rukifuiai 22-25, F 3 Responses 1 hr ago

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    I havent been diagnosed yet but Im pretty sure I have it. Doctors say I have disorder. It sucks. I started feeling this way almost at the end of my first year in college. I had a...
    flight12 flight12 18-21, M 2 Responses 1 hr ago

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    (Pic) Ya i have bad days, but they could be worse. I feel sorry for Mr. Stickman. He really has been out through a lot all these years.
    QuiltedBathwater QuiltedBathwater 18-21, M 1 Response 12 hrs ago

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    I was raped by my brother of 8-9 years my age; who was beaten and raped by my half brother of 10-11 years my age who was raped by his mother and beaten by our father. Fun family...
    LightYagami LightYagami 18-21, M 12 hrs ago

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    I am new to this site. misdiagnosed at 2 then again at 8 and finally diagnosed correctly with BM. MDA camp every summer but i still feel pretty alone. still struggling with the...
    sydneyalexis97 sydneyalexis97 16-17, F 12 hrs ago

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    Yep lol it is my weakness I have when it comes to attractive guys
    Unsettledteen Unsettledteen 18-21, F 1 Response 12 hrs ago

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    It's such a crazy things that I have to wait someone after I know he'll not come back 😒
    solida solida 18-21, F 10 hrs ago

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    People like myself need to be encouraged to put her own needs first and to find a relationship that reciprocates. I have been way, way too selfless. A traumatic pattern of being a...
    Ajushi Ajushi 31-35, M 10 hrs ago

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    So as u all know I'm jadah doll. And so many of u say I'm fake when others say amazingly nice things so thank you but I'm not who u think I am Al the people who think I'm fake...
    GIRLYGIRL894 GIRLYGIRL894 18-21, F 9 Responses 10 hrs ago

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    I had my heart broken by this person i was in a not official relationship with for about six months. We were and still are very close. What happened was that i started to get a bit...
    Rei124 Rei124 13-15, F 10 hrs ago

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    For the past week I've been running on 2 hours of sleep every night. I've tried absolutely everything. Nothing works. By the time I fall asleep it 4 am. I have to be up by 7 for...
    dirtbiker1254 dirtbiker1254 22-25, F 1 Response 9 hrs ago

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    Its not a major problem. Im not sure if some people will qualify it as a problem. But i consider it a problem. When ever i cuddle up with something i have a habit of nuzzling it...
    BDSMFan1 BDSMFan1 22-25, M 1 Response 9 hrs ago

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    They say having strict parents will discipline your kids for the better. But despite what my parents said I still went on with my life doing horrible and regretful things behind...
    Ennevi Ennevi 18-21, F 2 Responses 9 hrs ago

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    Why should I have a right to judge someone else's relationship based on their race?
    GemmaWeasley GemmaWeasley 13-15, F 3 Responses 8 hrs ago

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    Yes, I do have a name - Mz. *****. I am not your babe, baby or your honey, sexy, sweetie, sweetheart, darling. Call me babe, and you are blocked. It's quite simple really.
    whatyathinkaboutthat whatyathinkaboutthat 36-40, F 7 hrs ago

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    I call my freckles "angel kisses". I have so many of them, but they are all over my body, from head to toe, I hate them so much! They're super annoying. Isn't there a medicine to...
    faithomfg faithomfg 16-17, F 2 Responses 7 hrs ago

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    This song has always struck a chord with me. Not because of the girls bouncing on the bed. Not because of the window onto an underwater scene, Not because it’s by Leonard...
    BeauDaddy BeauDaddy 61-65, M 1 Response 6 hrs ago

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    I can't believe it I'm 50 years old and I not only had a vivid dream it was erotic and sexual usually I get aroused a bit the reach over and try to wake the old man up for a quick...
    Organia Organia 46-50, F 2 Responses 6 hrs ago