I Have Lupus

Personal Stories, Advice, and Support 377 People

    Get to see the rehmatologist tomorrow

    after work...should be real fun..
    Joshmstowell Joshmstowell
    22-25, M
    Feb 23, 2015

    Just joined this to see

    if I can find anyone who really understands my situation. If you have Lupus, no matter how long or how old you are, please message me. We can all work together to help each other! :)
    DeneishaN DeneishaN
    16-17, F
    3 Responses Apr 29, 2015

    My Story With Lupus

    I have had Lupus for 15 years. Here is my story and my experience. I was 16 years old and just starting my junior year in high school. It was August and very hot outside. I even remember what I wore that day. I was sitting in my first period class when it hit me. I became...
    aquinah aquinah
    31-35, F
    10 Responses Sep 1, 2008

    This is a long introduction

    but it best describes why I feel the way I do. I was diagnosed with SLE in 2002. After several years of symptoms and tests showing nothing but a thyroid problem. Through the years it's gotten progressively worse and my story is much like most people who have had to deal with...
    emusedone emusedone
    51-55, F
    Oct 27, 2015

    I Have Lupus

    i am a 46 year old mother of three grown daughters. i was diagnosed with lupus when i was 40. i had to go to a phycologist at mental health for about six months in order to get a grip on myself from hearing all the horror stories out there. what you read and hear are more...
    dbottlecap dbottlecap
    46-50, F
    Jun 21, 2010

    The Truth About Lupus!!!

    THE TRUTH ABOUT LUPUS!!!The Symptoms are Puzzling, Intermittent, and Frequently Seem Unrelated:  Mysterious Rashes, Sore Joints, Fatigue, Headaches!!!It can take years searching for a Doctor that can give you the proper diagnose of Lupus, which in itself is frustrating...
    Lonelycricket Lonelycricket
    51-55, F
    3 Responses Feb 25, 2011

    For those of you who have this disease,

    you know it's not an easy one to deal with. It's annoying, painful, and stressful. You have to change your whole life style and listen very carefully to your body! I've noticed since being diagnosed my flares and becoming closer and closer. Has anyone else had this issue?
    Lo2011 Lo2011
    26-30, F
    5 Responses Apr 17, 2014

    I was diagnosed with lupus nephritis back in

    2004, when half my kidneys were working and my creatine was above 2.3. Doctors told me I only had 6 months before i needed a kidney transplant, but then decided to put me on Solu-Medrol and by god's miracle my prayers were answered and my kidneys started to get better on their...
    26-30, M
    6 Responses Oct 10, 2015

    I was diagnosed 3 years ago on my birthday.

    I'm learning to take care of myself,unfortunately it took this disease for me to realize I'm important too!!! Things happen for a reason.
    jlynntholen jlynntholen
    41-45, F
    Jun 5, 2015

    Lupus Can't Take My Fighting Spirit

    Much of my life has been filled with pain. I have had 13 surgeries; I am a cancer survivor, and live daily with the debilitating affects of Lupus. Lupus has taken over many aspects of my life, sometimes leaving me in a fog and unable to express myself, but I still have a lot of...
    Lonelycricket Lonelycricket
    51-55, F
    4 Responses Feb 18, 2011

    Walk for Lupus is coming up

    and so is World Lupus Day. I am excited to go walk for myself and others that have those horrible invisible illness that we have. Living here in Canada where there are only about 500,000 people with Lupus really keeps me motivated to raise awareness about it here. Its still...
    Young24Lupus Young24Lupus
    26-30, F
    Mar 27, 2014

    I was diagnosed with Lupus in 2011.

    I thought it was no big deal. Yeah was I wrong. My whole life has changed. I was sore years before that. But it just gets worst. The meds don't really work plus I have other medically issues. Wow it's something always in pain. Can't get comfortable. Well i guess that is life.
    penosejo penosejo
    41-45, F
    2 Responses Mar 6, 2014

    Diagnosis Lupus

    You know something is wrong when you wake up every day with major pain in you joins and mucles....well this was what was going on with me.  At first I just figured I had over done someting while I was at work.  But the pain continued, especially in the right knee and my...
    crazycoolcat28 crazycoolcat28
    26-30, F
    7 Responses Sep 10, 2006

    I was diagnosed back in 2008,

    after not knowing why my hair was falling out, gums bleeding and joints aching. I'm kind of insecure, and unsure of my future.. I have 4 children ages ranging from 8 to 21. I long to be in a serious relationship, but scared to expose my flaws.... Balding, scaring and most...
    Rhondamo4 Rhondamo4
    41-45, F
    Jan 10, 2015

    Fighting Lupus

    I was diagnosed with lupus nephritis (sle) 3 years ago. I am 31 and have a 14 year old daughter,9 year old son and a 8 year old son.Before I was diagnosed with lupus I went to 2 different doctors and to E.R and no one could tell me what was wrong.My legs and feet was swollen so...
    lupusprincess lupusprincess
    31-35, F
    4 Responses Jun 6, 2013

    My doctor don't know

    if I had lupus or not but they said I did and the medication they gave me damaged my liver when they promised it wouldn't. I'm starting to think I'm just literally allergic to everything instead. Anyone else in the "unsure" category
    BasicGirlSally BasicGirlSally
    22-25, F
    Oct 28, 2015

    Am Waiting For the Flood Next

    Was told by my Dr. 2 weeks ago; have appt w/rheumatologist in 2 days.  Feel kinda sick over the whole thing.  Pissed off.  Feel like I have been battling crap all my life and now this.  In less than 10 days, found out my sister has lymphoma, both kids got...
    hobokelly hobokelly
    41-45, F
    5 Responses May 25, 2009

    My Current Lupus Story

    Systemic Lupus and Vasculitis/Neuropathic Pain I'm weary of the pain in my legs and feet and angry that the bandage drug (Neurontin) isn't even strong enough to keep this pain at bay long enough so that I can sleep and function in my personal and professional life. I'm pissed...
    echoic39 echoic39
    36-40, F
    5 Responses Jul 29, 2012

    Membranous Glomerulonephritis is what I have

    thanks to Lupus. I don't get as much information from my doctors so I come here hoping people will speak up and help each other on here. I have done countless of research and been on every website google gives me. It doesn't help inform me what I can expect in my life. I want to...
    Young24Lupus Young24Lupus
    26-30, F
    2 Responses Mar 11, 2014

    I had a flare in 2010

    and I thought that was the last. But, just last year - December 2013, I had fever and my doctor immediately want me confined in the hospital. So far, it was the worst and it changed me. It changed the way I look at things. It was the most painful, the most intolerable and I...
    jaki29 jaki29
    31-35, F
    1 Response Feb 9, 2014

    So I do not have Lupus,

    but I was wondering if anyone could give me a little bit of feedback. I went to a neurologist a few years ago for muscle twitching everywhere. He conducted an EMG and all that jazz along with tons of blood work. Everything came back fine except for my ACE and ANA bloodwork. I...
    faithhopelove13 faithhopelove13
    2 Responses Jun 30, 2014

    Lupus 20 Years On

    I was diagnosed at the age of 22, newly married and having just lost my first baby at 22 weeks pregnant.  At that time my GP told me I had this condition, they didn't know how I got it, it would probably kill me oh and I would probably never have kids.  I promptly went...
    kimsmith kimsmith
    1 Response Jun 27, 2008

    this is my story on how i managed to beat Lupus

    and the HOrrIBLE JOINT pain-- WOW!!!! Congratulations Crystal :) I'm so happy to receive your email and learn how much better you are doing. You are a stupendous example of applying what I talk about, and your commitment to taking your health seriously and doing something...
    heavenlygardens heavenlygardens
    51-55, F
    1 Response Apr 24, 2014

    i was diagnosed with lupus 22 years ago

    and remain trapped on the lupus rollercoaster
    ariesmel ariesmel
    41-45, F
    Aug 2, 2014

    25 Years With Lupus

    I Have Lived with Lupus for the past 25 years, and am still fighting it!  The cost of living with this disease continues to grow, I realize, as I recover from rotator cuff surgery - $20,000 in charges just from the hospital for an out-patient surgery.  The plethora of...
    MyBleedingHeart MyBleedingHeart
    46-50, F
    3 Responses Jun 3, 2008

    Cry Woolf

      I am writing a book on Lupus called "Cry Woolf" because I believe we have been in and out of doctors offices and treated like we are making this up, like we are "crying woolf" when it is real and they do not recognize our serious condition. I was...
    stephlyn stephlyn
    6 Responses Jun 12, 2009

    It's June 2 and that means in 14days I finally

    start Cellcept. I am extremely excited and so nervous that my heart is beating faster than I can text this story. I'm exited because all of the rave reviews of this drug effect on the arthralgia. Awesome. But the side effects like diaherrea and infections is definitely not what...
    Young24Lupus Young24Lupus
    26-30, F
    2 Responses Jun 2, 2014

    I'm 15 and I have been battling lupus,

    along with other auto immune issues for the past four years!
    angelcastille angelcastille
    18-21, F
    1 Response Dec 14, 2014

    I was diagnosed with Systemic Lupus

    Erythematosus when I was 10, I have Nephritis meaning it's only attacking my kidneys at one point it was attacking my blood, lungs, and kidneys as well as my skin. The doctors were shocked when I was diagnosed because Lupus is mostly discovered in women and not men. I have been...
    yeahidgaf yeahidgaf
    22-25, M
    3 Responses Mar 29, 2014

    Has anyone ever suffered from abdominal

    inflammation caused by Lupus? Maybe gastritis, IBD or IBS because of Lupus? I am just learning about this (actually I just so wanted to add more symptoms in my life yay) and realizing that Lupus is annoying my life. I am really going to have to change my whole life around. My...
    Young24Lupus Young24Lupus
    26-30, F
    4 Responses Mar 11, 2014

    Trying to Cope

    For many years I was sick and no one knew why. I remember starting having this rash all over my face that never really went away.  Now its funny.. I have this big X on either side of nose.  I have always been soo tired.  Never had that much energy and I was...
    shadowgirl shadowgirl
    26-30, F
    5 Responses Mar 29, 2008

    I don't get it. I get

    so worn out at the end of the day. I don't work, just me running errands and just being gone makes me feel so drained.
    Joshmstowell Joshmstowell
    22-25, M
    Dec 3, 2014

    will someone help me?

    my mom died of lupus but i was young when she was diagnosed. i dont know what type she had. i just want to know. she had diabetes and fibromyalgea also. she just hurt alot and her enzymes were really really high. she had bad vision and got infections in her mouth all the time...
    mstenorsaxplayer mstenorsaxplayer
    18-21, F
    2 Responses Dec 30, 2014

    On a positive note. I've had lupus

    for 25 years. I still work and have 3 children. I take a fair amount of medication but that's no problem. I have auto immune hepatitis and renal tubular acidosis too but nobody would know! I am a very positive person and don't let it rule my life !
    bunglebean bunglebean
    46-50, F
    2 Responses Jan 25, 2014

    Has anyone ever taken voltaren gel

    for temporary relief of inflammation? I keep seeing the commercials as I sit here in pain caused from inflammation. I am going to try using heat pad on my back to hopefully help it. But I want to know if voltaren has been used by anyone here suffering from inflammation and has...
    Young24Lupus Young24Lupus
    26-30, F
    Apr 23, 2014

    Hi my name is shanice.

    I'm 22 years old and just been diagnosed with lupus this is new to me I'm scared and just need to know so facts and things about. If there anything you think I should know please feel free to tell me.
    shaniceT shaniceT
    26-30, F
    4 Responses Jul 10, 2014

    I Should Have Been Dead Years Ago

    If I had listened to my doctor, I would be dead by now. I have had lupus for over 20 years. I was told I had 10 years to live when I was first diagnosed, because I was allergic to all the medications they gave me. I was very sick. I started researching every herbal and holistic...
    Maddie99 Maddie99
    56-60, F
    1 Response Oct 18, 2010


    The results of my blood tests came back and I was told today that I have Lupus. That was a big surprise, something I hadn't even considered. One of my friend's has severe health issues as a result of Lupus....I can't imagine that being me. I know Lupus affects...
    Celestiallds Celestiallds
    51-55, F
    7 Responses Apr 9, 2009

    Does anyone else get really nervous going to

    see a new doctor? I am on my way to seeing a new rheumatologist, but after years of seeing doctors and them not having any answers I get really anxious thinking they won't be able to do a whole lot. I still feel like I am imagining some of my symptoms, but then I see the...
    cminor289 cminor289
    26-30, F
    2 Responses Dec 30, 2014
    sweetie37 sweetie37
    36-40, F
    Feb 2, 2014

    I have been dealing with all the symptoms

    since I was 13. Especially the joint pain. It wasn't until my 18th birthday that I was diagnosed. I have my good days and my bad days. Every day I have body aches. I've even have days where I can't get out of bed. The day I graduated high school was the worst, I was in so much...
    Deborah1001 Deborah1001
    18-21, F
    Jul 30, 2015

    Well I'm in the ER..AGAIN.

    I'm 18 and lupus is already taking my eye sight.
    Deborah1001 Deborah1001
    18-21, F
    1 Response Aug 1, 2015

    The flare was horrible.

    My nephrologist told me that if I had waited for it to pass like my family recommended I would have been dead in two months. Lupus has dragged me through horrible sicknesses, a now crooked leg, fragile bones and just a damaged body all over. People don't think it's that bad but...
    mittensforkittens mittensforkittens
    18-21, F
    4 Responses Feb 17, 2014

    Soooo tired... Damn lupus.

    .. I'm a white young male and I have lupus which is rare. But then again without lupus...I would have never met my girlfriend so it's also a blessing.
    Joshmstowell Joshmstowell
    22-25, M
    Feb 7, 2015

    It Tries To Steal Your Soul

    This disease is ruthless and devious and devastating. It has robbed me of who I was. It has taken my life from me. It has taken my family from me; yes they are still here, but I can not be; not fully. Therefore, I am isolated and losing time with my child and my husband; changing...
    Invisible2unow Invisible2unow
    41-45, F
    12 Responses Jul 19, 2011

    Has anyone ever experienced hives

    and a swollen face with a lupus before? Just curious as I am flaring today and broke out in hives and a puffy face.
    deleted deleted
    4 Responses Apr 10, 2014

    I have an autoimmune disease

    that has affected my daily life for 12 years. I want to help other people like me. I want to encourage all of you to keep your heads up. I just started an instagram account called morehealthandwealth that will post daily motivation for being positive for better health and a...
    ampr111 ampr111
    26-30, F
    Sep 14, 2015

    You are amazing. My mother had lupus.

    I don't know what kind though. I was 5 when she was diagnosed. She also had fibromyalgea. Please excuse my horrible spelling. I know she was in pain all the time yet she kept pushing through life for 8 more years. Her enzyme level had stabalized so her dr gave her methatrexate...
    mstenorsaxplayer mstenorsaxplayer
    18-21, F
    1 Response Nov 24, 2014

    and my dr who is the best dr in town has no

    idea, i am going to foward him some of the info i have found on the web that he should know im begining to think he just doesnt have time for me
    ariesmel ariesmel
    41-45, F
    Aug 4, 2014

    Allergies have always made life difficult (pet

    dander, pollens) so I shouldn't be surprised that after getting Epstein Barr virus I would have lupus triggered. Still, with only 2% of people getting it and only 10% of men I feel like I hit the loser lottery. I won't have kids so that I won't pass these bad genes on. My...
    dharmafox dharmafox
    36-40, M
    Jul 9, 2015

    It's morning and I am having the pain worst.

    Right now, I don't want to think about it. I just want to stay focused in writing. It's what I always do.
    jaki29 jaki29
    31-35, F
    1 Response Feb 11, 2014
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