sdas: I would recommend going to your doctor and getting treatment, Googling will just make you worse...

Steve Ray: I didn’t know. My symptoms started with a month long high fever and flu like symptoms. Runny nose so bad that I got a staph infection on my face from wiping it so much. Then 5 months later I lost my hair, developed tender spots and started falling asleep in public I was so fatigued. Some neurological symptoms like losing my words and getting lost in familiar places. I was diagnosed with fibromyalgia at this time. I thought I had Lyme or a similar infectious disease but tested negative. After that my joints locked up completely. I couldn’t walk. I went to several area hospitals and tested negative for everything including high ANAs. I still believed I had an infectious disease that wasn’t being diagnosed. I took doxycycline at this point for 1 month. My symptoms improved and I regained mobility but I always had joint pain that limited my life. My worst pain was in my knees. Bad enough to wake me up if I would move in my sleep. Over the next 5-6 years I went to various specialists to try to figure out my joint pain and I didn’t get any answers. I walked into a new primary care doc for a Pap smear and my joint pain came up as part of my medical history and I wanted to rule out ovarian cysts because of pain in my SI joints. She tested me for ANAs immediately suspecting lupus. Then she sent me to a rheumatologist who found DSDNA antibodies. I went into the rheumatologist very skeptical of having lupus because I was told it was already ruled out. Anyway I was diagnosed within 2 weeks and on meds. I feel 1000x better on hydroxychloroquine now. I still have flares but I can move and work pretty much normally. I went to PT and I should even be able to run again. I had a healthy pregnancy and a healthy baby! It’s very difficult to diagnose. I feel like I just got lucky by walking into the right primary care doc at a time when my ANAs were elevated, which caused them to look for DSDNA. Other times that ANAs were tested they came back negative, including at the rheumatologist. ANAs fluctuate even in people with lupus. Most primary care docs won’t refer you to a rheumatologist without elevated ANAs, but you may still have lupus. I believe that you can also have lupus symptoms, or a pre-autoimmune syndrome that can be subclinical but still interfere with your life. I think this may be what happened to me.

Steve Ramos: I can concur about the ANA's being fluctuating. I had a positive ANA a year and a half ago, and another six weeks later, and got referred to a rheumatologist and finally after all this time, they called me. I was about to give up because I had asked for another referral at my PCP and they repeated the ANA and at that time it was negative. No more referral. But the Rheumatologist called a couple weeks ago from the first referral and surprise - high ANA, high Anti- Ro, High RF, and Low platelets. Yay. I finally finally finally get a diagnosis. I'm 45. I've been fighting for someone to find out what's wrong with me since age 14.

Steve Ray: I was a senior in college and was really exhausted and achy all the time. I thought I just wasn't dealing with stress well, not sleeping or eating properly enough or something. I didn't suspect anything was actually really wrong. I was massively over-scheduled, burned out and miserable, so I just chalked it up to that. Then my hair started falling out by the handful causing big bald patches. I went to my PCP who noted my joints were swollen too and ran bloodwork. High anti-dsDNA, low c3 and c4, anemia and leukopenia, as well as SSA+ and SSB+. Was referred to a rheum and diagnosed with SLE and Sjogren's.

Steven Gaffny: I was finally diagnosed about 2 months ago. Like many people who finally get diagnosed, I look back and figure I’ve had it 20 years, and I believe it would have been evident if everything that came up over the years was looked at in totality rather than as separate incidents. I had a number of labs that were out of line over the years out of the blue and would later go back to normal. I thought a lot of what I experienced (fatigue, joint and muscle pain, etc.) was just getting older. About a year ago, I got really stressed, and my blood pressure went up to over 180/120. I went to the emergency room, and they only found elevated pancreas enzymes and protein in my urine. My BP stayed this high for about 3 months. They usually watch urine protein over a 3 month period to see if it goes away on its own. It didn’t. My PCP decided to get all hands on deck, and he got me in to a cardiologist that day and to a nephrologist about a week later. I’m not sure what clued him in, but the nephrologist apparently looked at my records and immediately suspected Lupus. He did the ANA panel along with all of the other autoimmune tests at the same time, and I came back with positive homogenous ANA and positive antiDSDNA antibodies. I got the results online and immediately started connecting the dots. He told me he suspected Lupus and ordered a kidney biopsy. I saw the cardiologists (two of them together) again soon afterwards. I told them Lupus was suspected, but it went in one ear and out the other. I got a lecture about my lack of exercise and was told at my age I should be able to get down to 120/70 blood pressure. He put me on more BP medicine. Neither of them even bothered to look at why my BP would be stable and suddenly be 50 points higher for months. The flare eventually ended on its own. I think maybe getting a CPAP had something to do with it stopping, but there’s no way to know. The Friday before my biopsy, I suspected shit was about to get real and went out for some beers for my possibly final night out for a while. I didn’t have more than usual, but I woke up in an ambulance with someone yelling at me and had 80/60 BP when I got to the hospital. The asshole cardiologist apparently overmedicated me. It was a great final normal night out. I just got a $2k bill for the 20 minute ride. I’m going to forget my follow up appointment with them. My lack of exercise might have had something to do with having pushed through work and feeling near dropping dead every day. I would wake up with my feet so stiff it took me awhile to be able to walk properly. I started prednisone about 2 months ago, and the foot pain immediately disappeared along with just about every other pain I had. I hate how it makes me feel, but it’s good for that. My biopsy came back as Lupus Podocytopathy. It’s a rare form of Lupus Nephritis. From the numbers I’ve seen, you can probably fit all the white men with Lupus Podocytopathy in a high school gym together. I got unlucky in that respect, but at least now I know what’s been going on. After the flare ended, I was finally diagnosed as having had acute kidney failure. Thankfully, I found out last week my LN is in complete remission. Even on prednisone, my antiDSDNA stays elevated. It seems I have a sort of baseline Lupus that’s always doing something but my flares are very intense if rare. I’m tapering off of prednisone and getting onto CellCept now. I got a bit worried when I realized my nephrologist was planning to have the rheumatologist start me on my maintenance treatment rather than doing it himself because I originally couldn’t get an appointment for a year. I sent a message telling them I had biopsy-proven LN, and they sent me an appointment for the next day with a provider an hour away. He turned out to be great and said I can do virtual visits every 3 months unless something comes up. I got a call from his office saying he found my labs encouraging, and so I’m happy he’s keeping an eye on things even though the nephrologist is still mostly driving for now. So, once someone saw the Lupus, I had a pretty easy path to a diagnosis relatively speaking, and it answered a lot of questions.

Jeff Mos: I am in my early 30s. I'd been told I may have an inflammatory disease for years after surgeries for other issues we're very oddly taken. Such as, in 2018 my inflamed/infected tonsils grew back three times within months and I had to get three separate surgeries to remove them/other tonsil tissue in my throat. I did not have mono, strep, or anything that usually made tonsils react that way. I also began to have weird wrist "locking" and joint pain sporadically in 2019. In 2019-2020 I had bladder issues and horrible interstitial cystitis flares. In my 20s, I often had low grade fevers in the evenings and felt like shit. Looking back, it was all connected and overlapping with symptoms. In 2021 I began to have all over joint and muscle pain, burning in hands and feet, and collarbone Pain on top of extreme fatigue. I had chest pain that would wake me up at night but clear cardio workup. I felt like I had the flu every night. I went to my primary Dr because I'd never had the burning before and shortly after, my mother was diagnosed with lupus. I got tested in late 2021 after liver enzymes were elevated and my ANA was 1:1280. Referred to rheum. I have other chronic illnesses and genetic blood issues, so I think I'm an unfortunate grab-bag of interconnected systemic issues. All of my last blood work in Dec was good, so my rheum has dx me with Undifferentiated Mixed connective tissue disease but states it could be lupus, just not attacking the organs yet. My updated blood work is due to come in this week, so we will go from there. Best of luck in your journey!

Tony Carter: Sorry my post is all over the place. My Lupus was found by accident from a doctor who had an interest in hematology. Back around the Christmas holidays of 2014/2015, I had an extremely bad sore throat and slept majority of the time for 2 weeks. I should have went to the clinic but it started getting better the end of the 2nd week before I went back to work. That should have been my first sign something wasn’t right as I’ve never been that sick in my life. I’ve never even had the flu and my very first flu shot was in 2019. I’ve had problems with anemia but what I started feeling was a different type of tired. I would get enough sleep but still feel like I hadn’t slept in weeks. I would fall asleep at work and one time it was in a meeting. I figured it was from poor diet and stress. My mom was diagnosed with cancer and by the time she saw a doctor it was already at stage 4 kidney cancer. Between work, driving her to her medical appointments, hospice and dealing with her finances, I put my health to the side. 2018, I started noticing that I was having flu like symptoms off and on a few days out of the week, low grade fevers. Along with cold sweats at night. Passed it off as pre-menopause. 2019 comes around, my mom passes away and the day of her funeral, my aunt (her youngest sister) falls unexpectedly ill right after the funeral and passes away 2 weeks to the day my mom passed away. I’m blaming my fatigue but not able to sleep on stress. Few months later, started focusing back on my health. Weekly blood tests to monitor my RBC count. It showed my RBC count was low again and instead of my doctor trying to figure out why, he’s just treating the anemia with iron pills and B12 shots. My doctor told me one day to come back on Tuesday as he would be in the office that day. No need he said to make an appointment, just come in. So I did but he wasn’t in, another doctor covering for him was. This other doctor noticed that my WBC count was really low and said I had no immunity. But I felt fine and my RBC really improved. He said it was probably nothing but wanted to refer me to a hematologist to rule out cancer. Months of seeing the hematologist and a bone marrow biopsy showed no signs of cancer. He said it looks autoimmune related and referred me to a rheumatologist who referred me to an allergist and nephrologist. I had a negative ANA test so it was initially thought that I didn’t have Lupus. In 2019, I decided to get my very first flu shot which resulted in a weird rash that none of the doctors could explain other than it was not an allergic reaction to the flu vaccine. 2020, I started noticing a lot of hair loss, swollen and painful joints in my wrists, knees and ankles. A higher protein level in my urine. A kidney biopsy was the last test that showed inflammation and I was diagnosed with Lupus.

Jason Yii: I got diagnosed when I was 15. Didn’t even know I had it, had to go through so many labs and doctors to know what was wrong with me. Everything started because I couldn’t lay down at all, my back right side hurt so bad and I started swelling up. After weeks of going from doctor to doctor, finally found out i had SLE and lupus nephritis. I was only 15 and my whole life came downhill thanks to that diagnosis. Now, years later i’m still trying to live with it and with all the repercussions that comes with it.