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I Have Polymyositis

A Polymyositis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Polymyositis. You're not alone. 70 People

    Diagnosed With Pm At The Age 29

    I was just diagnosed with polymyositis back in November 2012. It started with significant swelling in the feet and ankles then gradually moved up to the legs. At first I didn’t think nothing of it base on the fact I have no medical conditions. I been to two different hospitals...
    MrsOnenonly MrsOnenonly 26-30, F 6 Responses Jul 12, 2013

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    I'm 52 And Was Diagnosed June 2011. No Improvement.

    I've been on 60mg prednisone for 1 1/2 yrs, had two 8 hour retuxin infusions, tried methotrexate which made me deathly ill, and nothing has helped. I am still able to get around with some difficulty; mostly stairs and standing are my problems. My CK levels indicate I am in...
    theboles theboles 51-55 2 Responses Oct 8, 2012

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    Diagnosed December Of 2012

    After about 5 years of getting weaker and weaker, I started to fall on a daily basis. The bad part of this was that I couldn't get off of the floor without help. My daughter was with me one time when I fell and she insisted that I see the doctor. I was diagnosed right away and...
    genesjulie genesjulie 46-50, F 3 Responses Jul 18, 2013

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    I Was Diagnosed With Polymyositis After Suffering A Cardiac Arrest.

    Around September 2010 I started to notice that I was feeling very tired and fatiged most of the time. I wasnt very motivated and I didnt have very much energy to do the day to day tasks of life, for example cooking, cleaning, shopping etc. By December I had started to notice that...
    Alive2011 Alive2011 36-40, F 17 Responses Dec 29, 2011

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    About Me

    When I first wrote my story, it was about my feelings on my disease, but that's not me. I may be over 60 but definitely don't think about it. I still see a "strange" reflection in the mirror. That's not me, that's an old person? I drive a bright red jeep grand cherokee turbo...
    Becca2002 Becca2002 66-70, F 2 Responses Apr 21, 2012

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    Adipose Stem Cell Treatment For Polymyositis?

    I have had polymyositis for over 7 years and all the usual treatment (prednisone, methotrexate, IVIG infusions, rituxen infusion) don't seem to help. I have more bad days than good, barely walking, and getting up from a seated position usually requires assistance and I've lost...
    seberlin seberlin 46-50, F 3 Responses Oct 14, 2013

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    I was diagnosed with polymyositis at 25

    after 2 years of being told nothing was wrong with me- I needed to workout. Since being diagnosed, I've lost the ability to stand from a seated position, walk up or down steps an I can barely lift my arms up long enough to brush my teeth. I've been on several different meds...
    JamiesWorld JamiesWorld 26-30, F 2 days ago

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    Polymyositis - Yes You Can Be Cured!

    If you read on any website or in medical books that there is “no cure” for polymyositis, just don’t believe it, as a full and lasting recovery is possible. I was diagnosed with polymyositis in 1981, at age 26, further to muscle weakness and pain, blood tests, a biopsy and...
    Nelligan Nelligan 51-55 15 Responses Oct 20, 2010

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    Oh The Joy Of Polymyositis

    Before Aug 2008 i was a very "normal" girl, well compared to now. I was working and taking a break from college to plan my marriage. I didnt know it then but the weakness and acheyness was all for a reason. I woke up one day with pain in my shoulder, as the day progressed it...
    txangel1019 txangel1019 22-25, F 8 Responses Mar 8, 2012

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    Is There A Happy Ending To This?

    I was officially diagnosed with Polymyositis about 2 years ago. My symptoms first occurred about 6-7 years ago; around the time my youngest son was born. I started to have a hard time lifting things over my head. Then I started to get clumsy. As it got worse, I couldn't carry...
    J9yRul80 J9yRul80 31-35, M 3 Responses Sep 25, 2013

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    Living With Polymyositis

    In 2007, I was diagnosed with polymyositis. It took so long to find someone to do a muscle biopsy that I was down to106 pounds before i could be diagnosed. I was placed on 250 mgs. of predisone to save my life and after two days my medication was dropped to 200 mgs. This sudden...
    m9239 m9239 61-65, F 2 Responses Oct 25, 2012

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    Me And Poly.

    I have been dealing with poly for about 20 years.I am glad to see that there are others that understand the dealings on what poly can due to you not just physcially but mentally.
    allen180 allen180 31-35, M 2 Responses Aug 7, 2012

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    My PM Story

    Diagnosed in 1999 while in Thailand. Once back in the US was seen by several "specialists" and tried to understand the inexplicable. A great band sings"If I knew now what I knew then..." I have been on the typical cocktail of meds with prednisone as a constant...with years of...
    Turtlepace76 Turtlepace76 36-40 1 Response Jun 18, 2013

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    Djs34

    54 year old man recently diagnosed with polymyositis, experiencing weakness of the proximal muscles in my upper arms and upper legs. High doses of prednisone have not helped. Starting combination of methotrexate and ivig. Eager to hear from others and to learn what to expect...
    Djs34 Djs34 51-55, M 2 Responses May 2, 2013

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    Need To Know What To Do To Help This Im Starting To Give Up

    Hi my name is will I was diagnose with polymyositis 6 years ago after a muscle biopsy but I had a sorry doctor who didn't follow up all he did told me to do ivgg but my insurance ran out and I had to stop , f or five years I been in a wheelchair .I been to doctors but all they...
    Pooh2414 Pooh2414 31-35, M 1 Response Jul 19, 2012

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    Poly And Me

    It is May now, I wrote last in January? Can't remember. My CPK did go down from 5000 to 600 then to 363....but it went up slightly. The doctor thinks it is from lower dosage of prednisone, 10mg every other day. Or it could be from daily exercise that PT prescribed to me. So my...
    haroldinek haroldinek 61-65, F May 4, 2013

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    Meds...

    Can you tell me what meds you taking? and if they help
    cassie87 cassie87 26-30, F 4 Responses Sep 18, 2013

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    Finally An Answer

    For 3 to 5 years I have had numerous and varied symptoms of weakness, trouble swallowing and shortness of breath. At the time, there always seemed to be a reasonable answer, but my GP didn't like certain things showing up in my blood tests and sent me to a neurologist in June of...
    Becca2002 Becca2002 66-70, F 1 Response Apr 21, 2012

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    I Have Polymyositis

    I just found out I have this rare diease , polymyositis. I've never heard of this before. My body been going through changes for seven years. I had all kinds of tests done through the years, the doctors could not figure out what was wrong with me until seven years later.
    esseyb123 esseyb123 26-30, F 3 Responses Sep 21, 2010

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    My Mom

    My mom had this from the age of 23/24. Symptoms must have started before but as it seems quite rare docs didn't seem to no much. She passed away age 39 a month before her 40th. 2004 an I miss her like crazy.
    cassie87 cassie87 26-30, F Sep 18, 2013

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    Need To Know What To To Help This Im Starting To Give Up

    Hi my name is will I was diagnose with polymyositis 6 years ago after a muscle biopsy but I had a sorry doctor who didn't follow up all he did told me to do ivgg but my insurance ran out and I had to stop , f or five years I been in a wheelchair .I been to doctors but all they...
    Pooh2414 Pooh2414 31-35, M 4 Responses Jul 19, 2012

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    Just Diagnosed

    I was just diagnosed with polymyositis about 2 weeks ago. It all started with my throat and food feeling like it was getting caught. That went on for about 8 months. Then the front of my neck was very stiff for about 4 weeks. That started to go away and i was feeling like i might...
    shawshaw26 shawshaw26 41-45, F 2 Responses Apr 25, 2013

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    Living With Polymyositis At 24yrs Old

    I was diagnosed over a years ago. I was working full time and just had graduated college on a criminal justice degree. Life was going good for me not much to complain until February 2,2011. I slipped down stairs and my life changed forever. In a couple weeks my back started to...
    Cinthya0321 Cinthya0321 22-25 6 Responses Nov 16, 2012

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    Polymyalga My Old Foe

    I started with Polymyaga about 16 years ago, I was on prednisone high doses for about two years, pain in shoulders, I was lucky as the symptoms went on the drug, after two years the symptoms went and I was free untill two years ago after surgery and back the symptoms came. This...
    1mrsandy1aa 1mrsandy1aa 70+, F Apr 29, 2013

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    Fighting Back

    I was 35 years old. Very healthy, very active, enjoyed hiking with dogs and family, about to be married. I had just gave birth to my daughter, within weeks of being home I knew there was a problem. Simple things like tying my shoe, or picking something off the floor became a...
    charjay charjay 36-40, F 5 Responses Nov 14, 2013

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    Related Experiences

    I have taken three classes with one professor. Initially, he was just a teacher to me. Gradually, he became so much more. He is funny, intelligent, and down to earth - as well as...
    queenvm queenvm 22-25, F 21 hrs ago

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    First, let me say that I am married, though not happily so. I've been married for five years to a woman that not only cannot have children, but even went so far to suggest that...
    vsavatar vsavatar 31-35, M 1 Response 9 hrs ago

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    I AM 22 YEARS OLD AND WAS JUST DIAGNOSED WITH A CHOLESTEATOMA AND THIS IS MY STORY! WHEN I WAS 2 YEARS OLD MY GRANDMOTHER WAS CLEANING MY EARS WITH A Q-TIP AND I ENDED UP FALLING...
    brandyx0x brandyx0x 22-25, F 4 hrs ago

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    I have lived in San Francisco and the years that I spent there have opened me to many experiences that I may have otherwise never have tried. Things like BDSM are no longer taboo...
    musclemanmark musclemanmark 26-30, M 1 Response 4 hrs ago

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    After losing such a close friend it has become more evident that the stigma that comes with someone being mentally ill needs to be removed. Depression, anxiety, panic attacks etc...
    kiara95 kiara95 18-21, F 17 hrs ago

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    I do believe that dreams have meaning and give us hints and clues to what awaits in front of us. I get different kinds of dreams from Prophetic, Progressive, Epic, Recurring, False...
    Merarim Merarim 22-25, F 2 Responses 14 hrs ago

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    So before I wrote about how I was the kind of person who would push people away that I care for. I have learned how to stop doing that, however it did take losing someone I love...
    beachbumgirl1 beachbumgirl1 26-30, F 13 hrs ago

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    Okay.. I am not good at this kinda thing telling anybody things since i'm shy but please bear with it and don't judge me. Last year the day after my birthday my right lung...
    pandacutie pandacutie 16-17, F 9 hrs ago

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    So I come from a pretty poor background. (not going to bore you with the whole long sad sappy story) Any way I'm 18 now, married, with a 3 year old daughter. I have my own house...
    Rskittles Rskittles 18-21 3 hrs ago

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    I found out i had HPV less then a month ago. I'm a single mother but I'm still so young. 22. I feel like i managed to ruin my whole life. My ex had told me how i got it and it's...
    Jackie1991 Jackie1991 22-25, F 15 hrs ago

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    I'm smart. I have a masters degree in business. I run a photography business since I jumped around at a few corporate business jobs and decided they were not for me and I would...
    Fotogchick Fotogchick 36-40, F 11 hrs ago

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    I did not write this, I wanted to share it on EP for all the ones who have been betrayed. Studies have proven this to be completely true. THEY ALWAYS AFFAIR DOWN Men always affair...
    Brokenami Brokenami 31-35, F 1 Response 10 hrs ago

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    I have gigantomastia. I'm only 16 and already have 30JJ breasts that lactate too because of it. Anyone else have this problem?
    PrincessAllie1 PrincessAllie1 16-17, F 2 Responses 8 hrs ago

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    1. I think its pathetic for girls/women to ask a guy if he has abs, iv learned that you shouldn't judge someone by their looks 2. I am a psychopath who will eventually end up in...
    PsycoKiller PsycoKiller 16-17, F 3 Responses 6 hrs ago

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    1. It's going to take me a while to write this post because I'm debilitatingly indecisive and always on the fence. 2. I have a slight inferiority & guilt complex but I had it...
    Plutonianbabe Plutonianbabe 16-17, F 2 Responses 6 hrs ago

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    I'm going to turn 16 next month and I still haven't been kissed. I remember when I was younger, I had told myself that I would have kissed someone before I turn 16. Now I just feel...
    cara1998 cara1998 13-15, F 5 Responses 6 hrs ago

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    There are lots of times I wonder what is a family? Why do I not have one? What have I done to be so alone? There are nights where I just feel like crying because I always see...
    Sakura1567 Sakura1567 18-21, F 2 Responses 6 hrs ago

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    So here goes nothing. 1.) I fall in love with a part of nearly ever person I meet and get close to. It's not a question of who I have a crush on, but rather to what extent for...
    mauvemoose mauvemoose 16-17, F 5 hrs ago

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    I think about suicide a lot... everybody says I have nothing to be sad about, I have nothing to be unhappy about... but in reality I have a lot to be sad about... no one knows how...
    OliKean OliKean 13-15, F 2 Responses 4 hrs ago

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    I am fourteen years old and I have been dealing with trichotillomania for almost 10 years now. I started pulling when I was 5 years old. Before I pulled i twirled my hair a lot. I...
    mentalhatchet mentalhatchet 13-15, F 3 hrs ago

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    I am a sophmore in high school, and I have never been kissed. There are kids in my class having sex and I still have not had my first kiss. Also I'm wondering WHEN IT WILL HAPPEN...
    jenseb jenseb 16-17, F 3 Responses 1 hr ago

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    I just love them. Everyone with their own personalities. It is nice to have a common space and the occasional inbox. Everyone in my circle is a LOVER in the sense of caring for...
    breathingeasy breathingeasy 41-45, M 21 hrs ago

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    It doesnt just end there... I have an interest in women who are big in various ways. If they have huge boobs, its incredibly attractive. Watching them grow bigger? Even more...
    chemicals14 chemicals14 22-25, M 21 hrs ago

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    Learning to love my body has got to be the hardest task I have ever tried! Years of been told you are fat, years of been told you are horrible have taken their toll! I've cried a...
    Sandyshaw13 Sandyshaw13 36-40, F 4 Responses 21 hrs ago

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    I battle GAD every time something new happens in my life. Am I only suppose to live in a confined space where nothing new happens? But I find that I do live there in my little...
    lozza568 lozza568 22-25 1 Response 19 hrs ago

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    My eyes change colours all the time and I never know what to say when people ask what colour they are. But on the bright side I always get told I have beautiful or gorgeous eyes!
    TayBearXoXo TayBearXoXo 13-15, F 18 hrs ago

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    Actually I have no friends right now. But when I did have friends it used to be more guys than girls. Not because girls suck or anything(no pun intended)but because of my own...
    nekerd nekerd 18-21, F 1 Response 17 hrs ago

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    Up to now I had not dressed head to toe as a woman. I've work skirts and the occasional dress, make-up but not the full thing. I had to know if this is something I'd like, how good...
    meganb1 meganb1 36-40, T 1 Response 15 hrs ago

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