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I Have Lupus

Personal Stories, Advice, and Support 342 People

    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 22-25, F 3 Responses Jul 10

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    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

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    i was diagnosed with lupus 22 years ago

    and remain trapped on the lupus rollercoaster
    ariesmel ariesmel 36-40, F Aug 2

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    Submission

    If I’m being honest, earlier that year, there were signs. One, at least. A sore on my scalp, but I paid it no mind. Figured it must have been caused by my hairstyle being too tight. Anyway, it was gone within a week. Then there was nothing. Nothing, that is, until that fall of...
    inthelupus inthelupus 31-35, F Nov 7, 2013

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    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 41-45 2 Responses Jun 27, 2008

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    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 13 Responses Jul 19, 2011

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    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 22-25, F 2 Responses Jun 2

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    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 16-17, F 4 Responses Feb 17

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    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

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    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 22-25, F Mar 27

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    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

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    sweetie37 sweetie37 36-40, F Feb 2

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    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 36-40, F Aug 4

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    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

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    Why

    They tell me there is nothing to do right now. Why am I to wait.wait until when??? I just don't understand.Wait for what ??
    DAC1961 DAC1961 46-50, F 2 Responses Dec 3, 2009

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    I am so sick today literally slept all day ate

    only in the morning before this started I can't move with out lightening bolts of pain shooting up my spine and legs ugh I feel as if my legs are moving on their own volition it's like I can feel the muscle spasms when the pain starts... After watching my ex go through heroine...
    wildhorsefeathers wildhorsefeathers 22-25, F 1 Response Jan 25

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    Not I, my best friend.

    Anyone here know of a Lupus support group?
    Jarlaxle Jarlaxle 46-50, M 1 Response Feb 21

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    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 22-25, F Apr 23

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    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 18-21, M 3 Responses Mar 29

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    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 4 Responses Jul 29, 2012

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    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.
    Lmm14 Lmm14 31-35, F 4 Responses Apr 10

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    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

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    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

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    Lupus Lives On

    Please excuse typos as I am writing this through my phone. Jeez where do I begin? I guess I will continue from where I left off from my other stories and start with how it's been. I continue to battle with slight depression and while I was seeing a psychiatrist she stopped...
    Young24Lupus Young24Lupus 22-25, F 2 Responses Dec 1, 2013

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    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 22-25, F 2 Responses Mar 11

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    My mother has Lupus and another auto-immune

    disease. The lupus is attacking her red blood cells and her count is going down. They have done a blood transfusion, retuxin, and another treatment which included steroids. None of this has worked and her blood count continues to go down. She is very weak (only able to sit...
    jguzikowski jguzikowski 51-55, F 1 Response Dec 10, 2013

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    I was recently diagnosed.

    It's scary. The doctors are testing to see if it is systemic.
    sapphire601 sapphire601 31-35, F 1 Response Sep 24

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    Happy New Year! Its still a happy new year

    despite having to bring lupus along with me into 2014. I am pretty ok today. I will admit I am putting on a brave face writing this despite having cried this morning about my decision to not have kids ever. I am only 24 and I am saying this. I refuse to play 50/50 with a human...
    Young24Lupus Young24Lupus 22-25, F 4 Responses Jan 1

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    When Did This Happen?

    Well all this started about 10 years ago. I was working at Pet Smart, dating a guy, things were going very well for me. One night I suddenly couldn't sleep. I had to move my legs every 30 seconds or a very deep annoying numbness set into my knees. The next day I went to a wedding...
    lexieandazzy lexieandazzy 31-35, F 1 Response Feb 18, 2008

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    I am marisela I'm 18

    and was first diagnosed with Systemic lupus at age 10 I stayed in the Children's hospital for more than 5months with out knowing what I had then they told me I had Lupus they thought I might have gotten it from my great grandfather I have lived a hard life growing up with this...
    sela1095 sela1095 18-21, F 3 Responses Mar 15

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    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

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    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

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    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

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    I know others will agree

    when I say Lupus sucks. Not just the constant doctors appointments, the many specialists, the many pills, our support systems, etc etc etc. It can go on forever. What I hate the most is the constant pain everyday. The neuro pain, the muscle aches, the knees deciding to be...
    Young24Lupus Young24Lupus 22-25, F Feb 24

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    Surprised.....

    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

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    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 6 Responses Mar 29, 2008

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    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 1 Response Jan 25

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    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 46-50 5 Responses Jun 12, 2009

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    Horrendous Lupus!

    I'm just 14 years of age, and I was diagnose with a so call disease name "Lupus" a year ago. Through out my life I'm expecting nothing to go wrong and continue with my daily life. My life before Lupus was really great, I would eat everything I want, I would exercise as...
    kiki35 kiki35 16-17 2 Responses Apr 10, 2009

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    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

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    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 3 days ago

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    Lupus Lesson Learned

    I was diagnosed with Lupus SLE when I was 12 years old. I've been fighting this for years now. I managed with it so young because I didn't know what I had. I didn't know how sick I was and I didn't know what Lupus was. As I got older I noticed things started getting harder. My...
    poeticdiva poeticdiva 22-25, F 1 Response Nov 25, 2011

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    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 22-25, F 5 Responses Mar 11

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    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 18-21 1 Response Jun 30

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    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

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    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

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    Almost one year later (10months) of being

    diagnosed with Lupus I can honestly say ****. lol I am swelling again like a balloon just like before I got diagnosed. My fingers, ankles, and my shoulders are inflamed and extend out. Let me explain why. On January 30th, 2014 I finally got my first appointment with the Lupus...
    Young24Lupus Young24Lupus 22-25, F Feb 2

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    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 22-25, F 4 Responses Apr 17

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    The Enemy Within

    Lupus has taken my past nDestroyed my Future!!!I was born with Lupus n went through Hell n Back!!!I've had Over 13 surgeries n survived Cancer!!! Just when you think your life is getting Better,Lupus Attacks Again!!!Lupus has Destroyed one of my kidneys n severe nerve damage...
    Lonelycricket Lonelycricket 51-55, F Feb 28, 2011

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    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

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    Related Experiences

    I was diagnosed in 2009. I went to see my DR for a checkup when my back started to hurt. I originally thought it was a herniated disc because just before the pain set in I was...
    goodwitch011070 goodwitch011070 41-45, F Nov 4

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