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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. 20 People

    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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    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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    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 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, 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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    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 7 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 2 Responses Oct 7, 2009

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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 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 Dec 11, 2014

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    Related Experiences

    I was officially diagnosed with IIH yesterday. 10 days ago I went to bed with a really bad headache and woke up at about 2 in the morning with severe vomiting. I was then taken to...
    Hannarr Hannarr 18-21, F Jan 12

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    Five years ago I was diagnosed with fibromyalgia & it absolutely ruined my life, causing me an extremely humiliating, very public fall from Grace. My symptoms effected my job...
    xxTayaLionessxx xxTayaLionessxx 41-45, F Dec 29, 2014

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    I've been reading some stories of those who suffer from fibro and have become so despondent from so much pain for so long, & have become so depressed from the effects of fibro on...
    xxTayaLionessxx xxTayaLionessxx 41-45, F Dec 29, 2014

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    My husband and I are coming up on our 10 year anniversary. He has always been a big guy; 6'5 400 lbs when we met but I am 6' myself so that didn't really bother me. He had a...
    Recabec Recabec 36-40 Jan 14

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    I stumbled across this literally about half an hour ago while surfing the net and I think I may actually have this. It may be a result of my ADHD/ADD (I have yet to get it tested...
    divermel divermel 18-21, F 3 hrs ago

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    Not really. But I want to be diagnosed soon, as I believe I have it. You see, all my life I've struggled to live normally. I failed. A lot of people dislike me because I am...
    deeplydull deeplydull 18-21, F 2 hrs ago

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    It's been a more than a year when this incident happened. I had a friend (she wasn't that close or anything, just in between an acquaintance to being a friend). She calls me...
    VVmommy VVmommy 26-30, F 1 hr ago

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    A few simple of experiences of why I have cried in school: Kindergarten: I called a boy in my class stupid, then later when I saw a police car park in front of the school I started...
    SparkleSwirl SparkleSwirl 18-21, F 10 hrs ago

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    I am a believer. I believe god has protected me in many situations. I have really been distanced with him. I losted my grandpa November 2012, right after my mom shot herself in...
    shygirl1986 shygirl1986 26-30, F 4 Responses 4 hrs ago

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    Last night was one of the worse ones in a few months. I was in a house that I have dreamed of before (not to this extent). Anyway, the beginning started off normal I was getting...
    RjMommy245 RjMommy245 22-25, F 4 Responses 3 hrs ago

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    I have poly arthritis - arthritis in more then 5 joints of my body. Initially I thought it was from over doing it at the gym as the specialist had no reason as to why it started...
    heyitsabike heyitsabike 31-35, F 3 hrs ago

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    I only got 3 hours of sleep last night. I dreamt that I accidentally killed my friend's newborn baby as I was trying to shush it so we could sneak it somewhere because she wasn't...
    paradiseaurora paradiseaurora 18-21, F 4 Responses 2 hrs ago

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    No I haven't - and while I can never say never. I'm pretty certain that I won't in the future. However I do have a story about a night when I almost did. My friend J and I went...
    Mmmcherries Mmmcherries 46-50, F 1 Response 1 hr ago

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    Lately I've been living my life just like I always wanted, I still don’t trust people but I realized that I don’t have to trust every single person I let into my life, I just...
    SmartnDangerous SmartnDangerous 22-25, F 31 mins ago

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    Alright so I'm curious and just looking for answers. Throughout my life I have always had trouble expressing myself to others, wether it be joy, sorrow, exc. I bottled up a lot, I...
    TheNeverendingLlama TheNeverendingLlama 18-21, M 10 hrs ago

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    I think I have social anxiety because of I'm in a class where I have no friends I literally almost cry.... Once I did cry bc I had to talk in front of my class.
    KaylaBVB KaylaBVB 16-17, F 2 Responses 10 hrs ago

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    Im never aloud to do anything. like they all lock me in my room and never let me go anywhere unless they are with me. i have no life. i have no friends because im not aloud to go...
    TiffanyNicoleLovesNene TiffanyNicoleLovesNene 18-21, F 8 hrs ago

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    That's about the entirety of it in a nut shell. I fell for a girl when she was 17, I 18. We had a very intense, deep love for only 3 months time. After 9 years of remaining...
    jsc0tzi jsc0tzi 26-30, M 7 hrs ago

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    Every weekend I take a long nap for all the hours of sleep I have lost during the week. Its usually 2 hours or so. For a couple of years now I've been getting nightmares in BROAD...
    dailydreamer70 dailydreamer70 22-25, M 7 hrs ago

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    If someone asked me what I'm doing with my life, I couldn't give an answer. I've never been more lost than I am in this moment. I'm not going to school, I don't work, and I have an...
    sadvibes sadvibes 18-21, F 1 Response 5 hrs ago

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    I think my situation is called anxiety. I have a fear of running out of resources..like money time and especially natural resources . As weird as it sounds I have a serious fear...
    SoBeCurious SoBeCurious 18-21, M 4 Responses 3 hrs ago

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    When I get stressed I get sad.. I have a bad habit of thinking too much and working too much...like I have 4 part time jobs and I also go to school/college.. It's so stressful to...
    Zineq Zineq 16-17, F 1 Response 2 hrs ago

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    Yea, I'm going down that road again. I've been clean for 2 and a 1/2 months. I'm just really stressed recently and having those bad thoughts. That God it's winter. But I have swim...
    AngelsAgainstUs AngelsAgainstUs 16-17, F 1 Response 9 hrs ago

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    Hey! Im 38 years old, almost 39 but my humor is silly/weird and in the gutter most of the time! Lol....so pull your pants up people and save that **** for later cuz I wanna talk...
    MissJamie12 MissJamie12 36-40 1 Response 9 hrs ago

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    Especially when it's wicked late and you know you have to get up in three hours, so then you question what the point is to even trying. Even if you do fall asleep, you'll just be...
    wedgieshurtalot wedgieshurtalot 16-17, F 1 Response 8 hrs ago

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    anxiety is the worst feeling to have. Even worse than depression to me.
    LazyApe LazyApe 31-35, M 2 Responses 7 hrs ago

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    Our plumber was over. I had just finished my shower and got into my short gown (just below my bum) I had just done my make up and brushed my hair and went downstairs for a drink...
    Frankiehw Frankiehw 13-15, F 5 Responses 6 hrs ago

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    I can't stand being treated like crap and being lied to my husband and I are married for 20 years and shouldn't have for the longest time he is not loyal and a conniving creep I'm...
    Bella70 Bella70 41-45, F 4 Responses 6 hrs ago

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    So here it is, we have a guest yesterday. I thought it's my mother's friend and then a guy walked in and called her mom, he was so handsome. My mom called me to come near and said...
    Awesome003 Awesome003 13-15, F 5 hrs ago

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    A poem for big sis When we meet I want to hug and make it seem like forever. because no matter what you and I endeavour I love you big sis and I wish I could feel your...
    RaigaKurosuki RaigaKurosuki 16-17, M 5 hrs ago

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    Is it legit to call yourself an american even if you really dont have an american blood?
    faye08 faye08 18-21, F 2 Responses 5 hrs ago

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    I think a lot people have this feeling on Sunday night
    MrsHouhouland MrsHouhouland 26-30, F 3 hrs ago

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    whenever I read my posts I notice I have the worst grammar ever, too bad there is no edit feature on here
    jbm1984 jbm1984 31-35, F 3 Responses 3 hrs ago

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    Yup I have an English one today from 12:30-2:30 PM (my time)
    BloodRedDarkness BloodRedDarkness 16-17, F 2 hrs ago

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    Not completely. I have never known and I don't know how to know.
    bombchu bombchu 22-25, F 2 Responses 2 hrs ago

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    it appears that the months from September to December have all been shifted by 2 months. going by the first 3 letters of those months, they all indicate that they're each 2 months...
    jayciedubb jayciedubb 46-50, M 1 Response 2 hrs ago

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