hi, i am in my 50's and have had lupus (SLE) for many years. it was in remission for several years but due to a very stressful personal situation it has some out with a vengeance! i am having mini strokes and the doctor is blaming the lupus for this. it is effecting my life like it hasn't before. in the all the years i have had this my joints were the hardest hit with pain, this is the first time that my life is being put in danger from this disease. i am scared

Hello everyone my name is Joyce I am 30 years old and a mother to a 3 year old little boy. In 1998 i began to feel notice strange things going on with my body fatigued, Sensitivity to light, inflammation and pain in my joints,and a rash that was developing over the cheeks and bridge of my nose. I was told by a doctor in 1999 that I had rheumatoid arthritis and given naproxen and methotrexate. While it relieved some pain and swelling. I still experienced the other symptoms. I became pregnant the following year and miscarriage at 15 weeks during this time doctors diagnosed me with systemic lupus erythematosus. I went on to miscarry 2 more times and have 2 stilbirths one being recent (May 19th). With this recent lose of my daughter at 21 weeks I have this strong and overwhelming since of guilt feeling like I could have prevented this with one simple thing a baby aspirin. When i was pregnant with my son i was put on a baby aspirin regiment which i later found out was because of the antiphospholipid antibody syndrome. I was sent to a different hospital for my prenantal care due to problems with my insurance and they had no knowledge of my previous medical history the only test they did was the the alphfetoprotein (AFP), or triple screen when i was 18 weeks. I constantly obssess over the fact that I should have took it upon myself to start taking the aspirin on my own reguardless of what the doctors didn't do. I should have known from my last pregnancy that the baby aspirin would have made a huge difference. It just seemed as if my mind went blank with this pregnancy. I tried so very hard to do everything just right that i forgot the MOST important thing. Since this has happened thoughts of suicide have crossed my mind. I know those are crazy and very selfish thoughts i have a 3 yr old son to live for. But the pain of this lose has me so very devastated that sometimes i just don't know where to turn.

Hi my name is Zenaida - nickname Z - I am 46 and hopefully here to bring some comfort, hope and encouragement to all. I was diagnosed in 94 and had alot of the same problems discussed here. Eventually ending in a blood clot in my leg that almost killed me and caused me to stop working. I have been on disability since 2000. Just wanted everyone to know there is hope....I have been in remission now for six years!!! Totally symptom-free and medication-free, other than Synthroid and Coumadin. Please feel free to contact me if you have any questions or need support and encouragement. I will never forget how bad things were when I was going through the worst flareups and I count my blessings every day for my continuing good health.

hello everyone i am 21 yrs old and i was diagnosed with lupus at 19 when i got pregnant with my first son who is now 2. it was a rough pregnancy not because of morning sickness and all of the other things that go along with pregnany but because i was worried everyday if i would lose hi b/c of my illness. needless to say he came out with no problems and i now also have a 5 month old son. happy, somewhat healthy and enjoying being a mom.

Hello all,
My name is Colleen, I was diagnosed with discoid lupus when I was 12. At 20, after my first child was born I was diagnosed with SLE. I am not going to lie, I was crushed. I am 29 now and I recently had a baby girl who is an absolute joy. I have a man in my life that is sensitive to my needs and does the best he can to take care of me. I love my family with all my heart but sometimes I feel like maybe I took on too much. Sometimes I just want to run away and leave it all behind because I don't feel worthy. I can't even keep my house clean, and forget about getting a job! I get so fatigued at times I cant even get myself in the shower. I try to adopt a positive attitude but at times it is very difficult. Anyway thanks for all of the support this site brings.

Hi everyone. My name is Lisa, and I was diagnosed with SLE a little over a week ago after experiencing my newest symptom, dysphagia (although I've been having symptoms and positive ANA tests for nine years). I am married and have an adult daughter. My 81-year-old mother also lives with me. I had a baseline eye exam this past Friday and will begin taking Plaquenil this week. In the past month, I also was told my thyroid, Vitamin D and absolute monocytes are low, so I've started taking medications for those as well. I also take Omega 3, B-12, Mobic Patanol for dry eyes, and a gastric reflux medication. When I'm feeling up to it, I love to read, motorcycle (I also have a Harley, Jennie), boat, garden and play with my three cats and white dove. I work full time for a small publishing company.

Hi everyone!!
I started having rashes about a month after I started working at a hospital, i was embarassed thinking my arms were breaking out so i always covered them up. I started passing out more and more often (it was something i did only about once a year in HS so none of my doctors thought it was anything bad) and when i passed out while working in the ER they freaked out...I went through multiple cardiac tests, neurological tests...they came up with migraines. (my rashes meant nothing to any of the doctors i saw) I went to my ob/gyn for a yearly pap and she noticed my arms, and ran an ANA. My ANA level was close to 700...so I finally saw a rhuemy who diagnosed me with SLE.
Im on plaquenil and since november it has helped me a lot. Sun makes the rashes worse. and because i was left untreated for 2 years, i have bad scars where I would pick at them. (DONT EVER PICK YOUR SKIN!! lupus pople have skin that scars really horribly!)
i hope to find some support where my family and friends fall short. I love them and all they do, but sometimes i want to talk to someone who KNOWS what the pain is like and KNOWS what the fatigue is like...anywho...feel free to add me as a friend! Love to all and best wishes for energy and pain-free days! <3

Hi, my name is Rhonda and I am from America. I am a 40 year old homemaker and full time student. I have had this rash on my stomach for about seven years and was finally diagnosed with discoid lupus about three years ago. To make matters worse, about a year ago I was diagnosed with hypo thyroid disease. And just recently, with sle lupus. It's been one medical hardship after another for me and my family and friends don't understand the anxiety I have been under. I am so glad I find this forum!

Hey, my name is Silv.. Im 20.. I was diagnosed with S.L.E 4/5 years ago. When I was told i had it i didnt have a clue what it was.. Over the last few years im learning to live with it.. :) Live Life to the full :)

Hello, group. My name is Stacey. I'm a 36-year-old mom of 2 boys (3 & 9) and wife to a wonderful and supportive man. I was diagnosed with SLE after years of suffering and misdiagnoses. In the beginning I was in denial because my baby sister passed away at the age of 26 from complications of SLE, and I freaked out. Luckily, though, my heart isn't being attacked like hers was and I don't have the blood clotting problem that she does. It's tough to function everyday, feeling more like I'm 86 than 36, but I do my best. People look at me like I'm a freak because it'll be 95 degrees and I'm covered up with a hat and a thick jacket because I'm having severe chills or just to cover up from the sun since I'm extremly sun sensitive. I'm glad to be here!

MY name is Liz I have recently (past 2 years) been having trouble with auto immune problems my rheumy thinks I have lupus along with sjogren's. All the symptoms are there for Lupus but all test are negative.
My grandmother fought Lupus all her life and she passed away 11 years ago on Sept 11 from complications of Lupus.

Hi, my name is Jessica but I like to be called Jess.
I am 24 years old and was diagnosed with lupus in September of 2008 after a week of testing in the hospital.
I wasnt really eating because it hurt to move, I went to the ER 3 times previously and they always sent me home with some aspirin. By the 4th time I went, I could barely walk, and it took over 2 bags of saline solution to get me un-dehydrated. After a week of testing they finally decided to test me for lupus.
I am currently on 40mg daily of prednisone which has caused significant weight gain (70 pounds >.<)

This weight gain has severely depressed me and I hope being here will help me, if for no other reason then to feel like I am not alone (I also just moved to the east coast, my entire family is on the west coast (of the US) and I feel so alone here)

Thank you for reading

Hallo I am Ronel and 53. I was a tired child, always sleeping, canceling sports and outings for the sake of rest. My pains is one of my early memories, but nobody could say what was wrong and several doctors openly said I was neurotic. I qualified as a radiographer in 1975 and worked all my adult life.At 32 my hips were replaced, I had 3 pregnancies- one miscarried. 2 daughters aged 27 and 23. Eventually I was diagnosed after haphazard testing- I went to my GP to get a pain injection one fryday afternoon. I was on call that weekend I could not face the pain, but he refused and tested for heaven knows what and everything. Since then I had my shoulder replaced, and although I have long periods of remission I always have pain. I went on medical pensioen in 2000.

hi friends, my name is christine and i've been suffering alone for 7 years now. i don't know anybody with lupus nor does any of my family and friends want to talk about it. now that my symptoms have gotten worse, i've been looking for people to understand and be supportive of what i'm going through. i have 3 young boys, age 2,7 and 9. i have a loving husband to which i have been married to since i was 17. i had my first child at 19 and was diagnosed at age 21 in 2003 through extensive bloodworks and biopsies. i have severe alopecia, atrophy of the scalp, lost the left pinna of my ear due to scarring and i have ulcers and dark scars from my scalp, face, and arms to my back and sides. i get chest pains and vomit when exposed to sunlight longer than 10 min. someone please tell me they understand me. or am i just crazy. i love life and my kids are the reason i keep going but what do i do when they are grown move on?

Hi everyone, my name is Vie. I'm a fashion blogger living in Bali. I was diagnosed with Lupus 2 years ago (I am now 29 years old) and it attacks my joints, muscles and recently I've been experiencing a very disturbing back pain. It's extremely difficult to find doctors who specialize in Lupus here so I'm keeping my options open. I regularly do my blood test to check on my Anti DS-DNA and to monitor my health overall. I'm hoping to be able to connect with everyone, to exchange thoughts, to give love and support because sometimes I wake up in the morning and I just feel so depressed.
Thank you for a wonderful group and I look forward to talking with everyone here. Much love from sunny island, Bali!