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I Have Amyopathic Dermatomyositis

A Amyopathic Dermatomyositis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Amyopathic Dermatomyositis. You're not alone. 33 People

    Experiencing Extreme Fatigue With Amyopathic Dm

     It's taken years to diagnose DM since the first symptom appeared in fall '99 with a persistent red ring around left eyelid.  In '04, a red patch appeared on rt. side of neck; in 10/06, red splotchy spots appeared on the knuckles and joints of both hands, one looking...
    willamae willamae 66-70 8 Responses May 28, 2009

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    Is It Normal To Have Flares Everytime I Get Off Of Predisone?

    I was diagnosed with this disease in May 2012. I have been on methotrexate, plaquenil and predisone since. The predisone began at 60 mg which really helped the rash. My rheumatologist had me gradually decrease the predisone but I cannot get below 5 mg without the itching...
    abikat abikat 61-65, F 1 Response Nov 2, 2013

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    I Hope All Dm Sufferers Read This

    I have had DN since 1984. There are 3 tests to be sure it is that. One test is a blood test to check CPK count. It is the muscle enzymes in the muscles from damage. There isthen a meurological test to check the muscle activity with needles into the muscles. but to positve always...
    dunawaysm dunawaysm 51-55 Feb 1, 2012

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    Living Each Day

    Hi my name I's Veronica I'm 36 and i have a challenge of Dermatomyositis it I's very hard to live with this i would just like to talk to someone with the same thing I'm going threw . I am to the point of heading toward the next and last change i was praying i wouldn't ever have...
    Roxy12345 Roxy12345 36-40 2 Responses Jun 20, 2012

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    I Also Was Diagosed With Amyopathic Dermatomyositis

    I was recently diagnosed. My rash started on my cuticles right before Christmas. It has since spread to all the fingers of my right hand, my neck, my forehead, chest, hip bones, elbows, ears and nose. I am on 30 mg of Prednisone and also on Plaquenil. Plus supplements. I have...
    cpport cpport 46-50 3 Responses Feb 8, 2011

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    Dermatomyositis

    Hello everyone I am a 21 year old female who was diagnosed with dermatomyositis at 13. I must say at that age is was pretty hard but I had my mother who supported me %100. Dealing with prednisone for such a long time I gained an extreme amount of weight and my face looked like a...
    Notgonnabeatme91 Notgonnabeatme91 18-21 1 Response May 17, 2012

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    I Have Dermatomositis

    i have dermatomyositis. before i got this i weighed 97 pounds. now i weigh 200 pounds. i havent had a date in 2 years. it seems men  only want someone who is skinny. i will be on predson for the rest of my life, so i will always be large.
    lacleeta lacleeta 46-50 3 Responses Apr 7, 2009

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    My Experience

    HelloI have been diagnosed with Dermatomyositis now for the past two years.  i originally got the rash around the eyes and thought I was alergic to some make up or soap etc.  I changed everything, went to a naturopath and had hair strand test done.  Nothing major came up...
    bowles9 bowles9 41-45 1 Response Oct 19, 2011

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    Diagnosed With Dm A Year Ago.

    Last year on the 13th of January I got diagnosed with Juvenile Dermatomyositis. They told me the reason it was JDM was because I had muscle pain, ulcers, a rash and fatigue. My liver started to fail and got down to 3% function, I couldn't use my hands as they were swollen and had...
    ErrynDundon ErrynDundon 18-21, F 2 Responses Jan 6, 2013

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    Hey (:

    Hey, my name is Martha and I was diagnose with dermatomyositis since the age of 1 1/2. I am now 20 and still have dermatomyositis. Sometimes i dislike myself for being diagnose with something that can't really be cure or that's what i've heard. sometimes i feel that i won't find...
    sunflower300 sunflower300 22-25, F 1 Response Mar 1, 2013

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    Prayer For Urgent Causes.....

    For quick help... Pray to Saint Expedite Saint Expedite, you lay in rest. I come to you and ask that this wish be granted. ____________ (Clearly express what you want, and ask him to find a way to get it to you.) Expedite now what I ask of you. Expedite now what I want of...
    Gawtcha Gawtcha 26-30 Nov 24, 2011

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    Diagnosed In 2003

    Initially I was given plaquenil (caused a gawd awful rash), followed by prednisone to alleviate the rash, then methotrexate. Honestly, none of these worked and the side effects sucked. Eventually my rheumatologist found a study linking Enbrel and DM. I started giving my self...
    Yndmup Yndmup 51-55, F Sep 29, 2013

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    Dermatomyositis

    hello, my name is K and I dont have dermatomyositis but my best friend has. I was wondering how long you have this desease and if you are getting any better after the treatment. where do you take the treatment? He doesnt want to talk about it and he doesnt even want to see...
    katerinapap katerinapap 18-21 9 Responses Aug 24, 2008

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    I Have Had Dm Since 1984. You Can Be Sure That Is What It Is And These Are Tests To Verify It.

    I have had DN since 1984. There are 3 tests to be sure it is that. One test is a blood test to check CPK count. It is the muscle enzymes in the muscles from damage. There isthen a meurological test to check the muscle activity with needles into the muscles. but to positve always...
    dunawaysm dunawaysm 51-55 1 Response Feb 1, 2012

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    Hi =d

    Hi, I am seventeen. I was diagnosed with DM at age six. I went from a happy, healthy child to an overweight bum. I was on mass amounts of steroids. Luckily I went to a private school I had been attending since pre-school, otherwise I may have had a hard time fitting in. The...
    bubblesmile22 bubblesmile22 16-17, F 1 Response Sep 11, 2009

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    Related Experiences

    My symptoms started in January of 2015 and progressed quite steadily. It all started with a rash on my face and then spread to my arms and legs and hands. Soon after the soreness...
    keylasebs keylasebs 18-21, F 1 Response Apr 14

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    Hello my fellow EP members.I would like to share a personal experience that recently happen to me.I recently have been going threw some personal issues with my Family.I have been...
    Fruitypunch15 Fruitypunch15 31-35 12 hrs ago

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    REAL TALK POWER'S OF ENERGY GREETINGS!.. Its Me Icey! The Energy Manipulator, How are you all?.. Me? Im Well Thanks..And I've Got so much Stuff to talk to ya'll about! Its not...
    icey1 icey1 22-25, M 11 hrs ago

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    "Booksmart" "You don't use your brain" "Do not make decisions on your own anymore, ask me before you do anything" "F*** U" "Stupid" "Lazy" And that's not even half of it. I can...
    DearYou DearYou 22-25, F 1 Response 1 hr ago

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    I have been thinking about how many friends I have lately because well, I've been attending a few weddings and realized that if I were to get married, I would not have a full line...
    disastercupcake disastercupcake 26-30, F 1 Response 39 mins ago

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    Have any of you fully Gained your trust back up ? Is it truly worth working out ? I have read where some marriages are stronger after the apocalypse , how fu..ing long does it...
    jocu123 jocu123 31-35, M 4 Responses 11 hrs ago

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    I have to go to my grandmas for dinner tomorrow and I haven't seen this grandma since thanksgiving I haven't ate in a long time and I've been really dizzy and haven't felt well I...
    butterflybaby123 butterflybaby123 13-15 27 mins ago

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    I have a crush on a it on Tinder... Idk if he only wants sex but we talk sexy all the time which I love. he's so cute and can turn me on like THAT haha We also talk about our lives...
    WhatChrisDid4Love WhatChrisDid4Love 18-21, M 16 hrs ago

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    Yup and I never had one. Ever. I used to have girls that are friends but they didn't last long and I was too dense to notice that they probably liked me. I just didn't bother to...
    Xemplefied Xemplefied 26-30, M 1 Response 15 hrs ago

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    My ex was very mentally abusive to me. he had at one point hit me and my friends and family made me break up with him. I now see that it wasn't okay but I'm still in love with the...
    CopenhagenAngel427 CopenhagenAngel427 18-21, F 4 Responses 15 hrs ago

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    My mother has this rude joke she makes if I don't show her something i am doing when she asks, I'm looking at "****" and "willies" and goes and tells my stepfather. She tells him...
    1lonelydaisy 1lonelydaisy 41-45 14 hrs ago

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    I don't know why a part of me feels broken often times. As if I was empty. I manage to be good, to be kind, gentle and loving all the time but those things I do couldn't satisfy me...
    diane1996 diane1996 18-21, F 6 Responses 13 hrs ago

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    I always know when my period comes because of the pain. It's pain that hurts but isn't at the stage where I'm thinking "I can't deal with this anymore". It's like an alarm clock...
    1lonelydaisy 1lonelydaisy 41-45 1 Response 13 hrs ago

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    Boo! Did I get ya? I have never stopped. I never will stop. But if you're in this group you turned little ***** and quit, probably bowing to social pressure. Nothing can change...
    smokingrocks1 smokingrocks1 56-60, M 13 hrs ago

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    So, he approached my friend and said, o really like your best friend and i have to tell her where is she, i looked up and he smiled , i went over and sat beside my friend, and he...
    FAIRYboobs FAIRYboobs 18-21, F 12 hrs ago

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    My daughter is biracial. She was born very white and I thought that she would get a little darker with age, like many black and mixed babies do. She looks about the same now. I...
    Evesdaughter Evesdaughter 31-35, F 1 Response 11 hrs ago

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    So before I tell the main part of my story id like to rewind a few years and give some backstory. When I was 5 years old I was molested by my neighbor. He never penetrated but a...
    Niavati23 Niavati23 18-21, F 2 Responses 10 hrs ago

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    I have, me and my sister have fights with knives because we both like it and it turns us on, we play a game where we fight with knives and it's the first one to ten stabs to win...
    IWantToBeTortured IWantToBeTortured 18-21, F 9 hrs ago

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    I haven't spoken to my twin in a while. Sometimes I wake up from my sleep in the morning with a random song stuck in my head which I haven't heard in years. When I play the song...
    krimsonlove krimsonlove 22-25, F 1 Response 7 hrs ago

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    I wonder what it would be like, but frankly I have no time. I am not that interesting either, mostly just tired or negative. I know there should be some sort of "substance" to it...
    chairsmissing chairsmissing 22-25, F 6 hrs ago

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    Just an update: so many little things have happened between us that I just builds on the electricity and vibe I feel we have. I remember my friend asked him if there was a future...
    Tigercass Tigercass 22-25, F 1 Response 4 hrs ago

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    what's missing ..... I have lost that younger person who always was happy enjoying life getting out doing thing a single person should be doing before the evil VAGINITE came along...
    joophomme joophomme 46-50, M 1 Response 4 hrs ago

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    I have been cheated on by 3 people (that I know of, it could be more) One was a relationship of 2 years and he had cheated on me for 5-6 months, pretty much had a new girlfriend...
    tastethiss tastethiss 22-25, F 4 Responses 3 hrs ago

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    I have some good online friends, but no real life friends. My family rejects me and ignores me. I have a partner, but even he isn't as much "there" as he used to be. On the up side...
    UnwantedPup UnwantedPup 31-35, T 1 hr ago

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    i have social anxiety, it gets the best of me most of the time. especially when im at work i have a voice in my head that constantly tells me im doing something wrong. i get sweaty...
    haileymauck haileymauck 18-21, F 1 Response 38 mins ago

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    It's not everyday. It's not all the time. But I have it. And they gave me medicine for it. But I stopped taking it a long time ago because I wanted to see if I could feel better...
    Allforaview Allforaview 18-21, F 34 mins ago

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    My granddaughters don't accept me because of it . They wouldn't permit me to come to the wedding with an interpreter for my profound deafness. I don't like them any more. I'm not...
    MargaretCallinan MargaretCallinan 70+, F 2 Responses 16 hrs ago

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