I Have Dermatomyositis

A Dermatomyositis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Dermatomyositis. You're not alone. 56 People

    Hi, I'm a 47 year old nurse

    who was diagnosed with Dermatomyositis about 5 years ago. I have undergone all of the medical therapies available including several off label IV and IM treatments. Most recently, I received 2 IV infusions of Rituxin. My symptoms have never improved except slightly when I did...
    robinmac robinmac
    46-50, F
    4 Responses Dec 4, 2014

    Ibc & Dm

    In January of 2005 I was diagnosed with Inflammatory Breast Cancer (IBC) & Dermatomyositis. I had 8 treatments of chemo over 6 months and then a double mastectomy. As I started chemo my DM signs gradually went away. After I finished chemo slowly the hurting muscles, tiredness...
    lauriebez lauriebez
    Mar 11, 2012

    I'm 18 and I was diagnosed with JDMS in fifth

    grade. I underwent steroid treatment and have been in remission for a few years. Things got really bad when I was sick, but I wanted to post because there is hope. I had dreams of being and Olympic swimmer before I was sick, but had to quit because of the pain. After recovering...
    loganc10 loganc10
    18-21, F
    2 Responses Jan 1, 2015

    Living With DM

    I was diagnosed when i was 14 and been living with the disease for 14 years. The onset came on very quickly, it felt like one day i was an active teenager enjoying the school summer break, the next day i could barely walk. I was diagnosed with DM, and started treatment on...
    VeroniqueP VeroniqueP
    31-35, F
    1 Response Aug 1, 2013

    Ibc & Dm

    In January of 2005 I was diagnosed with Inflammatory Breast Cancer (IBC) & Dermatomyositis. I had 8 treatments of chemo over 6 months and then a double mastectomy. As I started chemo my DM signs gradually went away. After I finished chemo slowly the hurting muscles, tiredness...
    lauriebez lauriebez
    Mar 11, 2012

    Im Still Alive!

    I have basically been living with this disease for my whole life but only when I was 12 years old and suffering from weakness in my limbs, dizzyness and other ailments was I finally diagnosed correctly. My doctor even told my mom if we had waited any longer, I wouldnt...
    SunshynRay SunshynRay
    22-25, F
    4 Responses Jun 30, 2010
    kaaccy kaaccy
    18-21, F
    1 Response Mar 20, 2015

    I Will Try Anything!

    So I have wrote before but I am starting to get down, frustrated, and losing a little more hope everyday that I will not get this under control. I was diagnosed with DM about 2 years ago but all the symptoms started about 8 years ago. In these two years I have had very little...
    7 Responses Jan 13, 2013

    Dermatomyositis Changed Me

    About 2 years ago I  began loosing strength in my arms and legs, had a rash around my eyes on my knuckles and elbows...within a 3 week period I could no longer stand up/sit down/raise my arms above my shoulders. I was 24 years old. Doctors here were stumped....until my MOM...
    3o9ae98g60 3o9ae98g60
    6 Responses May 20, 2010

    I was diagnosed with DM in 2009 along with

    Celiac's disease, I guess I didn't realize what this disease was or how serious it was, at the time the Celiac's was my bigger concern , pretty sure it's because I was so dang hungry & every time I tried to eat I got so sick, any way, they put me on Plaquenil and said see your...
    Jill2006 Jill2006
    51-55, F
    Aug 21, 2015

    I Am Really Hopeless-dermatomyositis...seeking Opinions

    I am a 26 y old from Cyprus . I know that by now i should know EVERYTHING that considers my disease but the thing is i can't stand it anymore. I was diagnosed 5-6 y ago by a arm muscle biopsy with DM. i have elevated muscle enzymes in terms of 3000-9000(when i was diagnosed i...
    Armandos Armandos
    1 Response Dec 2, 2013

    Hi my name is Jamie and was diagnosed about a yr

    and a half age with dm. We very easily got my rash under control, butt my muscle involvement has been out off control. I shake sometimes violently from the pain or just spasms from nowhere, I have just In the last few weeks been able to get around without a walker and our help...
    jahsc jahsc
    46-50, M
    1 Response Jun 28, 2015

    I Have Dermatomytositis

    Hello everyone. I was diagnosed with JDM at the age of 2. I am 29 going on 30 so I must confess it has been a long journey. I live with the effects of JDM but also the side effects of all the medication I have taken over the years. I think we should book a conference room at a...
    aero176 aero176
    31-35, M
    2 Responses Jul 6, 2013

    Hi, my husband has Dermatomyositis.

    With it, he has excruciating migraines. The last ER visit took 9 hrs and 4 different meds to get it under control. They send him home with oxycodone. I'm so not happy about it. Now I read about a Botox treatment and Gamma knife surgery to block the nerves. Has anyone out here...
    TLI75 TLI75
    41-45, F
    Jul 5, 2015

    My JDM Story

    When I was three years old, I was diagnosed with Juvenile Dermatomyositis (JDM). It started out as a rash and then progressed to my muscles. I was on prednisolone and methotrexate. I'm 31 years of age now and have been JDM free since I was eight. The road to recovery has been a...
    LachyB LachyB
    31-35, M
    4 Responses May 31, 2013

    I Have Dermatomyositis

    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
    3 Responses Mar 2, 2013

    Hello all I have dermatomyositis.

    About 12 years ago it started. Before that I was ok, except I had Raynauds from a teenager, I thought it strange but never went to a doctor with it. In my forties my optician said I had very dry eyes, they also felt gritty, that was Sjoegrens syndrome. Both I lived with till the...
    gabrielsgirl gabrielsgirl
    61-65, F
    1 Response Oct 22, 2014

    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 set in and I found it harder to do every day tasks like brush my hair and climb stairs. No one knew what was wrong with me and after...
    keylasebs keylasebs
    22-25, F
    9 Responses Apr 14, 2015

    I Need Help With The Onset Time frame Of Dermatomyositis

    I have had Dermatomyosits for 12+ years and am fighting for my father's survivor's benefits. When SSA approved me, years ago, for being disabled I never knew how serious the onset date was. I was just glad that they realized how sever this disease is and that I didn't have to...
    belleofdisney belleofdisney
    May 26, 2013


    I will keep this short and to the point. I have been dealing with this for about 10 years now. The best thing that ever happened was about 3 years ago I go a rash on my hand that look very bad. I tried everything over the counter and nothing worked, they gave me steroid cream...
    chloreojr chloreojr
    3 Responses Nov 12, 2012

    Finally, I Found A Support Group Of Others With Dermatomyositis.

    Hi, my name is Linda.I have been struggling with this disease for six years now. When the disease first it showed up as a rash. The rash was in a butterfly on my cheeks, bridge of nose, eye lids. It also appeared on my hands, knuckles, knees and elbows. I would also get papules...
    lrymanski lrymanski
    31-35, F
    1 Response Jun 23, 2013
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