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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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I had never heard of it til my mom had it. She has COPD, so she also gets fluid in her legs sometimes. Her legs have swollen so big they actually burst open. It's probably why she...
    DarkwingGoslyn DarkwingGoslyn 31-35 Aug 10

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    I'm thinking of setting up an online forum for ppl in Australia with a neurological condition called Chorea (sounds like Korea). An uncontrollable dance-like movement that the body...
    heyitsabike heyitsabike 31-35, F 1 hr ago

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    I live in a foreign country. My father died 13 years ago. My mother is very sick. I must send money every month to her care giver in our home country. My brothers have completely...
    Haidas Haidas 36-40, F 1 hr ago

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    Is it possible for an alter to have experience memories, of something that they can't have possibly experienced? for example; a 57 year old male alter, having war memories. And...
    TheDylanWorld TheDylanWorld 13-15, M 3 Responses 1 hr ago

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    I have no life, I really don't, my days is spent as just sitting in my room playing games... And I'm always ruined by this: people think I have no life (agreed...) and my parents...
    WillToonz WillToonz 13-15, M 2 Responses 1 hr ago

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    It's been three months since I have felt a woman on my skin. After that break-up, until this day I have found only one woman who wished same than me, but she is so far away. The...
    Damaskox Damaskox 22-25, M 1 hr ago

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    Just found out today after months of suffering that I have eczema. It currently covers 90 percent of both of my feet. I don't know where to start or what to do.
    thurstll thurstll 22-25, F 1 Response 2 hrs ago

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    I have a few gay friend, and to be completely honest, I think that's pretty cool. They are some of the funniest awesomest people I've ever met and I'm glad that I can call them my...
    musicislife15 musicislife15 13-15, F 1 hr ago

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    Recently with the loss of my mom (currently putting her on hospice, she is going to pass young and her accident is a long story), things have been quite depressing and stressful. I...
    nikkidee92 nikkidee92 22-25, F 1 Response 1 hr ago

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    I feel like my friend is making awful and dangerous decisions about her life and now she is pulling me into them by using me as a cover and telling me everything because she thinks...
    Lonelyandlost31 Lonelyandlost31 16-17, F 1 Response 1 hr ago

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    I don't even care that I'm doing this again. I don't have any intention of stoping. I never tried stoping before.
    disasterland disasterland 18-21, F 1 Response 54 mins ago

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    I have a crush on this girl who has been my best friend for the past few years. I know so much about her and talk to her daily. The problem is she dates another person. It just...
    Nad124 Nad124 13-15, M 5 Responses 46 mins ago

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    I feel empty, lonely, worthless, in pain I have personified my feelings into a person that I think about and right about sometimes, tonight is an especially bad night. I saw my bf...
    Zezebabe Zezebabe 18-21, F 2 Responses 32 mins ago

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    So apparently to some people think I have a deep voice. So when someone dislikes me for whatever reason, they use that as an insult towards me. I don't get insulted easily AT ALL...
    seesarico12 seesarico12 13-15, F Jul 31

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    I don't have a nickname but my dad came up for one for my dog it's poo bean it makes me laugh but it's mean to my penny I call her penns, penny popper, and penny pie
    Dinosaurfanatic Dinosaurfanatic 13-15, F Jul 31

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    Hey I am a recent college grad and if you are too or are still in (or even just thinking about it) just message me it would be nice to meet people who have been in the same boat...
    wheyisolate wheyisolate 22-25, M Jul 31

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    I am a single lady of 57, I'd never heard of Sister Wives or polygamy until the television show. The very first episode I realized THIS was the type of family I'd always dreamt of...
    Darklydancing Darklydancing 56-60, F 1 Response Jul 31

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    last weekend I took Phoebe to see Luke. Hilary (Luke's mum) told me that the divorce between Tracey & Andy was due to his adultery, not hers, this didn't come as a surprise! She...
    wjean71 wjean71 41-45, F Jul 31

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    I have never had my first kiss, but I recently met this guy and i really like him. but I'm scared about my first kiss!! What if it goes wrong!?!?!
    dancingtoatune dancingtoatune 18-21, F 1 Response Jul 31

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    good night, too much is going on I need some sleep. I have to wake up early anyway.
    annieannana annieannana 18-21, F 1 Response Jul 31

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    My family has way too high expectations of me... I have to be the perfect kid, I have to make amazing grades I have to be skinny and fit and athletic, social and nice to everyone...
    Tayway22 Tayway22 13-15, F 2 Responses Jul 31

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    Family Tree Time Grandmother-Sorta Rich lady that disowned me and my mom -----------------------kids-------------------------- Bubba-Aunt that my mom has a bad relationship...
    KatIsAMermaid KatIsAMermaid 13-15, F Jul 31

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    Experiences with grammar and spelling issues. Also the ones with capitalized articles, prepositions, etc. I have no choice but to use them because they're already established...
    metaphornographic metaphornographic 18-21, F Jul 31

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    Everyone that has shared a similar experience all have one thing in common, we all say 'but I love him'. I hear your stories and can relate deeply to them. There would be nothing...
    Smiles4u2014 Smiles4u2014 41-45, F Jul 31

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    when your parents notice cuts i moved to my fist. i beat myself till tears ran forth like the river of sorrow in my heart. the bruises you cover. start wearing a shirt to bed so...
    saint0928 saint0928 18-21, M Jul 31

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    I have long hair. I have long weave. I just have curly hair that looks better straight and straight weave that looks better curly.
    Alylovespuppies Alylovespuppies 16-17, F 1 Response Jul 31

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    I have done corner time more times than I like to think. Off mum used to make us stand in the corner as a punishment in itself. Like if we were arguing or fighting among ourselves...
    Jilly53 Jilly53 56-60, F 7 Responses Jul 31

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    I can admit them. I get angry, I can be childish, I can be rude, I am sometimes reckless and carless, I can be a bit self-involved at times, I'm learning the difference between...
    holly2955 holly2955 18-21, F 1 Response Jul 31

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    I have long brown hair that reaches three quarters down my back and it's really wavy :)
    BriGrace BriGrace 13-15, F 3 Responses Jul 31

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    I have long brown wavy hair that reaches three quarters down my back :)
    BriGrace BriGrace 13-15, F 5 Responses Jul 31

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    It's taken me and my sister a very long time to realise that our mother is passive aggressive. We always thought our mother was selfish and wanted the world to revolve around her...
    Cupcakes95 Cupcakes95 36-40, F 1 Response Jul 31

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    I wanted to tell you all last night but I was to tired so here's what happened last night! I have been dating Kirk for about six months now and we have a great time together. He...
    JoMumOfFour JoMumOfFour 41-45, F 4 Responses Jul 31

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    The best lovers are those who are capable of loving from a distance, far enough to allow the other person to grow, but never too far to feel the love deep within your being. To let...
    hannagrace hannagrace 31-35, F Jul 31

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    So my boyfriends graduating from boot camp tomorrow, I'm sooo proud of him for sticking it through it :) I really want to be there tomorrow, since it's only a 5 an half hour drive...
    brandijade92 brandijade92 18-21, F Jul 31

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    Your Dominant Intelligence is Spatial Intelligence Okay, so what does that mean? You've got a good sense of space and how the world around you looks. You can close your eyes and...
    ClaudNine ClaudNine 18-21, F 2 Responses Jul 31

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    I've always had these abilities. I've always been able to feel if something is wrong, if someone is lying to me, if someone close to me is in pain or is sad. I see spirits in my...
    ChloeMaay ChloeMaay 18-21, F Jul 31

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    If you sit and think about it, we all have
    reelman4372 reelman4372 31-35, M 2 Responses Jul 31

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    Every few years I have a dream that I'm at a funeral. Sometimes I know the person (they're still living btw) and some dreams Idk who they are. They always get out of the casket...
    liquorxsmile liquorxsmile 22-25, F 1 Response Jul 31

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