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!

Looks like I'm the only guy here.

I'm Alexei. I was diagnosed with SLE about a year ago. I'm 17. I had been seriously ill for around 4 years and they couldn't figure it out. I started to develop kidney problems and that's when they found SLE.

I was recently looking through some papers that I found from when I was born that my dad threw into a pile and saw that I was diagnosed with Neonatal Lupus when I was a baby.

Hello everyone, my name is sarah and i am 21 years old i was diagnosed with lupus when i was a toddler. growing up with lupus was very difficult and i was in denial. I had one major flare when i was 9 years old to the point where i was only maybe 40 or 50 lbs and would go days without eating and in the hospital more then i was anywhere else. there was a point where they said i had 6 months to live but i told myself that this disease is not going to get its way. through mind power and god i survived and it went into remission for almost 10years. but about a year ago it started flaring up again. i am angry and sad alot. i dont want to get out of bed for days sometimes because it is all so depressing. my boyfriend is very understanding about it and my mother worries all the time. i just cant talk to them about it because they dont know how it feels. i cant eat alot of the time, i am in pain alot, and sleepy even when i slept for hours or all night. it seems that the mind power of me telling myself it is not going to win is not working this time. IDK.

Hello fellow warriors! I wish I had found this group sooner..because I identify more with the "warrior" inside me..I was diagnosed with Lupus in 1987..I have 2 beautiful daughters,3 grandsons..and a wonderful husband,who has always supported me. I also have Chrohn's,stage 4 COPD,lupus nephritis,macular degeneration,osteoarthritis,multiple spinal(unstable) fractures..not much left unscathed.,don't want to list everything!.I am a woman of great Faith..that is why I get up every morning! my med list is too long,won't bore you.I have just run the gammant on meds,pretty much..I lived a full life,for the most part..but I am very compromised at this point..not trying to be negative,just the facts! Ihave fought a goodfight..but I stiil get up every day..hoping to "feel" better..I discovered by trying to encourage others,instead of focusing on self..it brings great reward..but there are still times I retreat to myshell..I wish we all could be free from this illness,but no longer look on the what if's...it tis what it is..Also,now my hubby has a serious illness,so life's perspective really changes..trying to make the best of the situation...keep hanging tough everyone:)

Is there anyone on here since I don't see very many new topics being discussed?
I'm 27 and I was just diagnosed with SLE Lupus, arthritis and connective tissue disease 2 months ago. However I have been living with symptoms for many years. My first flare was after my Open Heart surgery to repair my Mitral Valve regurgitation @ 19. Everyone thought that it was carpal tunnel because it was only in my hands. However I have been loosing my hair on and off since I was 10. I am training to become a massage therapist. However 1 month into schooling I was in a car accident and broke my foot. I had 2 surgeries and a month after that I was told I need to have another open heart to replace the "repaired" valve. I was placed on a diuretic and thats when the lupus symptoms came back full force. Its only been 2 months but it feels like a life time already. My husband is very supportive however he doesn't understand whats going on with me and doesn't want to learn about it. Thankfully I have my mother for great support. and I have found this website plus a few others. I'm sorry to hear about everyone struggles with this disease and wish you all the best.

Hello everyone, my name is Kathryn. and I'm 48 years old. My twin sister and I was very ill at birth.. She didn't make it. She die shortly after being born. I've been sickly my whole life. In in out of hospitals and even home schooled sometimes. I had no ideal why until 13 years ago. It was Lupus (SLE) the whole time. Doctors said I and my twin sister was born with it after viewing all my medical records dating all the way back to my birth. I got married, had children,went to college,worked and have grandchildren. I'm now disabled because of Lupus. Lupus didn't stop me from living my life, it just changed how I live my life.. I'm just so thankful to Jehovah I'm still alive,for my family and for so much more! You all will be in my prayers.. I love you all.. Stay strong!

Hi my name is Tracie I am 45, I was given test by my Dr due to my symptoms and was just given the diagnosis of SLE on June 11th, so I am very new to this. I go to school supposed to be full time to become a pharmacy tech, more and more I am wondering if this is going to continue to be a possibility. I have known for a long time something was wrong but kept being told it was just fibro, maybe I do but I always knew there was something else going on. At this point my Dr says my central nervous system is definitely being affected. Right now I am on prednisone for the pain and inflammation. So far so good with that I still have pain but not as bad. I also take Aleve, doc wants to give me 30 days with the steroids and then start plaquenil. My biggest fear right now is wondering how long I have actually had lupus and what damage has actually already been done. Just really scared right now!!

Hi, my name is Jeri and I am 47. I work full-time at a beverage distribution company and also volunteer with the police department. Both of which keep me very busy. I have 3 grown children and 4 grandchildren. I have not received a firm diagnosis, only a "I'm pretty sure this is what we are dealing with". Started with a rash on my arms that later spread to my entire body 3 years ago. Just got the positive ANA this year. I have had other aches and pains that I never realized could be related. Been on so much steroid, I am currently 40 lbs heavier than I was prior to the onset of symptoms.

Hello, my name is Demeka. I'm 39 years old and was diagnosed with Lupus in December 2012. I have been suffering from unexplained pain for at least 13 years. I have been to every kind of doctor I can name. In December 2012, I found myself in the emergency room with pain so severe, my skin was hurting. The doctor told me that it sounded like it was related to autoimmune and referred me to a rheumie. I met with the referred doc and she let me know, after some tests, that it was indeed Lupus. She later let me know that she was concerned about me as she was of patients much younger than me. I let her know what I was experiencing and she put me on Plaquenil, Prednisone and Tramadol. The Tramadol gave me unbelievable headaches so she just told me to discontinue and use an over the counter pain reliever. I thought she had lost her mind. I took them like candy with barely any relief. Currently, I have given her her walking papers and will be seeing another rheumie this week. It took me two months to get this appointment. I hope he listens to me and helps me to live life a little more comfortably. Lately, I have also been experiencing panic attacks that leave me weak and sore all over. I pray he has a solution.

My name is Rebecca. I'm 26 and I've had active symptoms for about 6 years and a diagnosis for 2. We always suspected lupus was the culprit for all my odd health problems but really had to fight with the doctors to get a diagnosis as my ANA's were always negative. My symptoms in the last few months have gotten out of control. I went from taking just Hydrochloroquine and Aleve to being on both Methotrexate and Prednisone. It still doesn't seem to be enough and I'm really now feeling the loneliness and abandonment from my friend community as I cannot hide/ignore my symptoms anymore. I'm trying now to cope with the increasing severity of this awful disease. I can't play piano or cello anymore without my knuckles swelling up within minutes. Stairs are an impossibility now. I can no longer go out even if taking it easy and sitting down the whole time. I started using those store electric wheelchairs for longer shopping trips and hate the looks I've been getting from people who see a 26 year old girl with no visible deformities "goofing around" with the wheelchairs. I'm also afraid of what will happen in the near future. Will I begin to experience increasingly more serious symptoms? It's all very scary stuff... I joined this group and this site in hopes of bonding with people who are going through similar hurdles as I am. Thanks for listening to my pessimistic rant and hello. Hope you all are doing well.

Hi, my name is Karly and I'm 22 years old. I'm doing a research project on Lupus for my health psychology class. The purpose is to understand what it's like living with this illness. I would like the opportunity to interview members of this group by posting questions and having you respond to my posts with your answers. Please know that all information will be kept confidential, meaning no identifying information about any members will be used in my project. Individual responses will be combined together to form a summary report to further protect the identity of any individuals willing to participate.

Hi my name is Mary. I have had Lupus symptoms for over 30 years. I was officially diagnosed in 1995.
I have been through a divorce due to my Lupus and my ex-husband's inability to handle it. That was so traumatic for me because my children were torn apart and I still don't have a strong relationship with my son because of that. My divorce was 16 years ago. I have since remarried, 14 years now. My disease cost me my job and I have been on disability for 3 years. I have gone through the full gambit of NSAIDs and now have stage 3 kidney disease. I have Sjogren's syndrome, Raynaud's phenomenon, and Fibromyalgia. I also have degenerative arthritis in my spine and hips. Going through daily life for me is a struggle. I have trouble walking, sleeping, lying down, sitting and standing up. I spend more time at appointments then socializing. I have no friends other than on line support groups. I am a facilitator for a lupus support group.

Hello everyone, my name is Trish. I'm 55, and was just diagnosed with Lupus in late April, after having been diagnosed with Rheumatoid Arthritis in November, 2014. I work full time as Office Manager/Paralegal, in a government agency that defends indigent criminal offenders. I've been married for nearly 34 years, and have a 30 year old son who is to be married in September. I currently take plaquenil and methotrexate.

The diagnosis of Lupus was not a surprise, but I have to admit that even though I was expecting it following the RA dx, I was not really prepared for the confirmation of my expectations. The DNA test finally showed that it was Lupus as well as RA, and I was, for a lack of a better work, overwhelmed. I know that I am sick, and I do feel bad sometimes, but I can't really wrap my head around it yet. It's like "I'm sick, but I'm not sick".

Still working full time, and enjoy gardening, going to the lake, auctions, and cooking in our outdoor kitchen.

Glad to have found this group, and I hope I will be able to find some good information from all you folks who are further down the path than I am!

Hi to all and Happy Holidays! First of all I hope I am posting this correctly. I am kind of new to posting to online boards. I have been in a few chatrooms over the years but haven't spent much time on boards. I am a 51 year old mother of two adult children. One has been married for 2 years and the other a confirmed bachelor for now lol. I have been at the same job for 26 years an I do enjoy it though I spent 4 years off due to this SLE. Life has not been the same since this crazy disease came into my life. I have had several diagnoses over the last 15 years including fibromyalgia, Lyme diseases,possible MS ( due to Brain MRI in 2007) with over 20 white matter lesions but then none on optic nerves or spine, some suspected lupus but my ANA was negative at first though my test would show high inflammation in certain blood work. I wish I knew the name but it was a very confusing time. About 2 1/2 years ago I was diagnosed with SLEwith a positive ANA. Even though by this time my mom had been diagnosed with SLE too. I was very much in disbelief after all I had been through. My sister sadly has sjogrens and fibromyalgia her doctor believes she may also end up with Lupus. (She is 5 years younger) I am hoping for some support for this illness. I feel like it has taken over my life. My two best supporters are also dealing with it and really cannot help me. My mom (68 years) developed dementia as a result from lupus so she needs help and thankfully my daughter and I are able to. I thank God for my 27 year old son and 29 year old daughter and my son in law for all the love,support, and patience. I just don't want to overwhelm them with my lupus talk. Lol. I get tired of it myself. I am always tired. Lol. I look forward to getting to k ow you all. I hope I can share what I have learned as well as learn from you...at this point I am sure more of the latter. Take care all!