I had labs done last week and today my doctor called and said that I had indicators of lupus and would be referring me to a specialist. I looked at the labs, my ANA is high with a speckled pattern.

What can I expect at the rheumatologist appointment? Any specific questions I should ask? Any labs I should request?

This all happed out of the blue so I’d love all the advice! I know almost nothing about lupus itself so pretty nervous. Thank you in advance!

I’m really struggling with symptoms with no answers yet. I’m trying to emotionally prepare for either a positive or negative result. If positive at least I’ll have a game plan for what to do and I’ll have an answer. If it’s negative I guess I’m just extremely unlucky and have all these symptoms I’m gonna have to track and try to figure out how to fix.

What the hell can I do if this comes back negative?

F/33 Wondering if this could possibly be a symptom. I get this spot on my nose that begins by being sensitive. Over night it begins to weep pus and then scab up and sty like that for about 2 weeks. If the scab falls off like now, it will rescan and take another two weeks to heal. Also have kidney problems, abnormal back pain for my age, and I'm always exhausted. I'll be meeting with a doctor soon but wanted to see if anyone had suggestions before then.

I’m hoping to get some info from people on what their initial symptoms were and how they were diagnosed. Over the last few years I’ve developed a lot of symptoms but no rash or joint inflammation. My mom has an undiagnosed autoimmune disorder as well but her rheumatologist thinks it’s rheumatoid arthritis but she tests negative for it. My mom’s condition scares me, the inflammation in her hands is really extreme and she struggles to function. I’m just feeling a bit worried about seeing a doctor for this, they haven’t been very helpful with the symptoms I’ve seen them for so far… I have fatigue, mouth ulcers and potentially lichen sclerosis but they haven’t really been able to pinpoint it. Would a diagnosis even help me?

Hi Y’all. I’m a 27 hitting a breaking point with my health and looking for some advice. Since I was a child I’ve had a very distinct butterfly rash across my face. It is constantly there but definitely gets more red with sun exposure, stress, and just periodically I’ll flush all over. For as long as I can remember I’ve had a weak immune system (strep throat constantly as a child and a bad case of mono, as well as the period illness here and there). As an adult I’ve noticed my immune system just not functioning how it should. I got hand, foot and mouth from my nieces a few years back and had the doctors thinking I had shingles when I first went in. Over the course of the last 10 years I’ve struggled with keeping myself healthy. When I met my now husband he had concerns with how often and how severe I was getting ill. I’ve gotten my ANA tested probably 3 times in the last 10 years (most recently being 2ish years ago) and it’s all been negative and my other labs have been relatively normal so my concerns have been brushed off. Since then I’ve been officially diagnosed with raynauds to my hands and feet mostly due to “cold” I have moments where I will get freezing and shivering for 5 minutes (not in a cold setting) and get cyanosis around my lips. I’ve also been diagnosed with pcos, adenomyosis, interstitial cystitis, and chronic headaches/ migraines. I’ve dealt with chronic fatigue and exhaustion for years that I just thought was due to my busy schedule but it has never gotten better. I started a new job about a year ago working as a nurse in the hospital and since starting my job I am actually sick at least once a month but usually more often than that. In June of this year I ended up getting salmonella poisoning that landed me to the hospital. I’ve never had food poisoning and was very dehydrated with high fevers and didn’t know what was wrong. My imaging showed colitis and my CRP was 250 and my stool sample showed salmonella… i also had low levels of lipase. I was told the salmonella would probably clear up in a few days. I tested positive for salmonella for 2.5 months (I am a nurse so I had to test negative before the health department would allow me to return to work). I had to do two rounds of antibiotics and consume a bunch of pre/probiotics during this time. Since my “recovery” I’ve been suffering from recurrent nausea/vomiting and diarrhea since then and have retested and am still negative for salmonella. Every day I feel ill or sick of some sort and every few days I’ll have a day or two of nausea and diarrhea. I have been using my father in law as my primary care doctor for the last couple of years and have recently started expressing my deep concerns for my immune system. He had told me that he will talk to his immunologist friend and figure out what types of tests he should be ordering for me. We only have one rheumatologist in our area and she is very picky about who she accepts as referrals, and this is why I’ve yet to see her. In the past I’ve always had very thick hair but I feel like I’ve been losing so much hair in the last 6 months and I can tell by the size of my pony tail that I indeed am losing a lot of hair. I almost feel like I’m being dramatic because I’m constantly complaining about how awful I feel but I just know I’m not supposed to feel like this all the time and that it’s not in my head. Maybe 11 years ago or so my mom was suspected to have Lupus but ended up with a UCTD diagnosis. In the last few years she has been bounced back and forth between neurology and rheumatology without a difinitive answer as to what is going on but all doctors can agree she has an autoimmune disorder. Just looking if anyone has guidance on what tests have helped with a diagnosis (especially those of you who have had negative ANA tests but got a lupus diagnosis).

So at risk of being flooded with “just talk to your doctor” comments or whatever (I plan to, this though just only occurred to me yesterday) butttttt does anyone have lupus that does not have skin sensitivity to sunlight or even when tanning? I feel like I have had so many symptoms for so many years and have been just CHRONICALLY ill for so long, and it has never even occurred to me that it could actually be an autoimmune disease. Maybe because the doctors always tell me it’s nothing, or they tell me whatever actual diagnosis I have at the time. These are some symptoms I thought up in just a few min that usually make me sound crazy to others. Hair thinning but not balding. DEBILITATING Anxiety panic disorder/fast heart rate/ abnormal heart beat Constantly CONSTANTLY sick random fever/muscle aches/pains/flu like symptoms that sometimes turn into illness and sometimes don’t. Mouth/nose ulcers that last days-months Randomly getting hives allover I call them stress hives Headaches ALWAYS DIZZY/brain fog/ memory problems Always tired always Itchy all the time Swelling in joints Blurry vision at times not always Trouble concentrating/brain fog/feeling like I’m in a dream or behind a sheer vail. Planters fasciitis Muscle pain Finger numbness/tingling Light headed all the time Chest pain Kidney infections Having very random Very sharp breath taking stomach pains/nausea/vomiting/ diarrhea Muscle aches like when you have the flu but just, often even when not sick. I know I must talk to the doctor and get an ABA test or maybe two, and it could be nothing like it always apparently is. Just wanted to share and maybe gather some thoughts from others❤️

Hello all. This is a long one, I apologize in advance.

Newly diagnosed here after years of being shrugged off by countless doctors.

A little back story: I am 36F and have a 17 year old son who has special needs. I am married and work a full time job - thankfully from home. I think it's important to note that my husband also works from home. Up until a year ago, in addition to working full time, I was also taking full time classes for my bachelor's degree.

For 2.5 years now, I have had the most debilitating fatigue I have ever known in my life. It doesn't matter how much rest or sleep I got, I felt like I hadn't slept in years. I have unimaginable body aches - I can only describe it as the same body pain I experience when I am ill and have a high fever. In 2022, out of no where I developed pericarditis that lasted for serveral weeks. Brain fog and trouble concentrating quiet often, which can be stressful at work. Sometimes, I feel like I am drunk or high, but I do not participate in any of those activities. It has been hard to say the least, but you all know that. I dropped out of school last year because I just could not manage anymore. My PCP told me that I was just over exerting myself that this happens as we get older. I was 35 at the time...I have been to countless doctors, even a rheumatologist, but they all dismissed me as over weight and anxious.

Now that I am diagnosed and know that there is in fact something wrong with me and it's not " all in my head," I am trying to listen to my body and rest when I need to. I know that is important and I so desperately want to feel better. I still work full time, I still do what I need to do as a mother and wife. Here's the thing - how do you set boundaries with the ones you love? How do you educate them to understand what you're going through?

My husband is amazing...but since I've been diagnosed, I've sent/showed him rest results with explanations, I've sent articles and links that I've read to educate myself...all of which he doesn't even open or read. It feels very dismissive. Last weekend, some friends wanted to come over for a game night, which I love. But I wasn't feeling it. After being pressured from my friends and husband, I finally caved and said ok but asked that they got here earlier so that we could end at a decent time. I suggested 3pm. Everyone agreed, my husband tidied the house to prep and told me I could rest...but I eventually ended up helping here and there when he asked. My friends, who are also aware of my diagnosis, didn't show up until 8pm. Around 5pm, I asked my husband to cancel but he insisted that was rude to my friends and suggested I take a nap instead. They left at 1AM after I even asked politely that we wrap it up a midnight.

My parents are also aware of my diagnosis. They live about an away so I don't see them incredibly often, but I do visit as much as I can. This week has been particularly rough for me symptom wise and they know that. They are camping in my area and I told them I would stop by one night. My dad was very clear that they expected me there at least 2 nights. I went Thursday after work and broke down telling them how badly I felt. My dad kinda consoled me to some degree, but couldn't help himself and made the comment that I should try to "walk a mile in his shoes" to see how badly he feels. My mom quietly asked me if I was checking in with my doctor and if I needed some Advil, but that was it. They called me again yesterday after all of that to tell me that they expect me to spend all of Saturday (today) with them at the lake campsite they're at...even though they know I feel really bad right now.

So all of that to ask...how do you explain what you're feeling in a way that people will understand and grasp how badly this makes you feel? How do you educate them to make them understand the disease? How do I set boundaries with everyone I love without feeling like a jerk? I have just "pushed through" for everyone at the expense of myself for so long. I had no diagnosis and every doctor told me that nothing was wrong...so I fought my way through everything. I'm tired. I'm feeling a little sorry for myself. I feel dismissed by everyone around me. I'm all ears for any advice you all have. Thanks.

Hello, I was told I "probably have skin lupus" but I have a lot of symptoms of systemic.. but my CBC comes back within normal range. Has anyone else had that? And how did they diagnose you? I'm just trying to figure out how to get on track to feeling better. Do you have advice on other ways to figure out what's going on? I get skin lesions and scaly rashes all over in like 1" diameter, which isn't awful but they sometimes hurt. I also get nose and mouth blisters. I have light sensitivity. Raynaud's. I've been going to the doctor for abdominal pain and there was blood in my urine but it went away the next test. Eye doctor said I seem to have chronic dry eye. My mouth is frequently dry. I am incredibly tired daily. I don't even feel like me anymore. I get random swelling. My hair has thinned. I feel like a mess because there's always something and it changes? But also it's usually the same things on and off? The last doctor I saw about this stuff basically said he chalked it up to fibromyalgia, but he didn't do much investigation. Just a CBC. So I feel like he was just brushing me off. Anywho... Thank you in advance.

Hi everyone, get ready for a lengthy read haha!

I am a 19 year old female. Back in mid July of this year I started with symptoms of something. High heart rate, joint pain, muscular aches, extreme fatigue, swelling of hands, face rash, and random rashes in other spots of my body.

So, went to see my PCP, who I adore. Her initial thought was something viral, mono, etc. after negative tests for that and still feeling the same after 3 weeks she sent me to rheumatologist. (Tests showed elevated CRP, elevated sed rate, high WBC, etc)

This rheumatologist, who wasn’t my fav, ran just an ANA which came back negative. And rheumatoid factor also came back negative. She told me she doesn’t know and sent me on my merry way. Fast work a week or so, I move back onto campus. My mom (an ER nurse) decided our next step was to see an allergist, since I do have a few food allergies and medication allergy (sulfa). The allergist concluded no, not allergy related and thought I should go to endocrine. Fast forward a few weeks, still feeling like crap, endocrine couldn’t get me in til end of November. At this point I’m having trouble doing the 10 minute walk to my class, completing assignments, staying awake during the day, not sleeping at night, just overall awful. This past Monday my mom winded up taking me to the ER. My legs were trying to give out on me and I was really struggling. The ER triage doc, who happened to marry a rheumatologist, told me he believes it is rhuemaology and ran a bunch of labs while I was there. He also scored me a appt with a new rheumatologist this past Wednesday. The ANA from the ER came back positive and on the 1-4 scale mine was at 14. My CRP is continuing to increase. I also got this test back today (picture) not sure how to read much though, my mom did kinda explain to me. This rheum did a bunch more in depth tests like the pic to really figure out if it’s lupus or not. What is everyone’s opinions. I see him October 22nd and he put me on prednisone til then. Hoping it helps, today’s only day one and my legs are throbbing tonight I can’t even sleep. I’m so young and don’t want to be feeling like this! I also don’t want to have to drop this semester. This seems like it getting worse.

Symptoms as of now; Calf pain, pain when walking, leg throbbing, headaches, shortness of breath, rashes, EXTREME fatigue, brain fog, confusion, joint pain, hand swelling, bad hip pain, shakiness, weakness.

Lupus does run in my family if that helps. Idk.

Looking for some insight as to what could be causing my intense facial flushing. This started in January and happens nearly everyday with no specific trigger. The flushing seems to come in episodes ranging 30 minutes - hours. After the “flushing” calms down I do still have a red rash across my cheeks and nose - I just don’t have that intense feeling of my face pulsating and being really hot.

Some other symptoms I have are shortness of breath / rapid heart beat / shakiness / muscle and joint aches constantly / gi issues / random itching / and most recently my hair is falling out like crazy.

My doctor tested for Lupus and I had a negative ANA. He diagnosed my shortness of breath as asthma but the medication and inhaler l've been prescribed don't really help. He sent me to a dermatologist and they diagnosed it as rosacea - prescribed Azelaic Acid and it hasn't done anything to help. I'm getting so frustrated and feel like something more serious is going on. I have an overall feeling of unwell everyday. Im a 23 year old female, I'm very active and eat relatively well. I have cut out energy drinks thinking it could be the cause. I don't smoke or vape.

Could this still potentially be lupus even with a negative ANA? I read online you can still have lupus even with a negative ANA… I appreciate any input.. I’m getting so frustrated

I don’t have anyone who struggles with the same chronic pains and issues I have in my life so I figured if I shared in here and someone can relate then maybe I’ll start to consider the possibility I could have lupus. I have a family member diagnosed with lupus and another family member diagnosed with Rheumatoid Arthritis along with a multitude of autoimmune conditions including rare ones. My RA factor has been increasingly high for the past few years but I’m not going to get into my lab results since apparently nothing has been alarming enough to get a proper diagnosis.

I have nerve pain on the entire right side of my body (already saw a neurologist and they said I’m fine and I just have carpel tunnel). My joints get swollen and stiff (knees, elbows, ankles, toes, fingers, hips, collarbones, sternum and my neck). I battle extreme fatigue. I get low grade fevers. I get redness and itchiness in the same area a butterfly rash would manifest for diagnosed people but mine doesn’t look as severe and it’s more of like a thickening and tightening of my skin which makes it feel itchy and on fire. The list of symptoms goes on and I have other medical diagnosis but I feel like these symptoms specifically, no one in my immediate circle can relate to or understand how debilitating these symptoms are.

Any thoughts, advice or opinions are welcomed here. Thank you

I recently had an ANA panel blood draw and all came back negative except anti dsdna which is at 41 × 10³ iu/l (cut off 10 × 10³ iu/l). My great grandmother had lupus. My rheumatologist says there's no need to follow up or do further testing. I have recurring low grade fevers and debilitating fatigue. Periodic nasal sores and hair loss. Anyone had a similar situation? And left an elevated anti dsdna alone? I'm not sure if I'm being too anxious here but wonder if a second opinion would be a good idea

Hi all.

I already have a lupus diagnosis and see a rheumatologist, but mostly my symptoms are under control thanks to Plaquenil. However I think I'm in a flare rn? I already messaged my doc and am waiting to hear ball from them. But in the meantime, does this look like malar rash?

https://preview.redd.it/2eic5x0kifpd1.jpg?width=2556&format=pjpg&auto=webp&s=0398d91f385fcb7b554d951cb36dffaa2868e407

It's more noticeable around my nose and cheeks than elsewhere and doesn't photograph well. Just with the symptoms I'm already experiencing (rib/chest pain when breathing but also basically all the time, I've had pleurisy before) I'm wondering if I'm just naturally hyperaware of my body

hi just wondering if anyone has any advice for me please. I am 42 year old female, medical history includes hashimoto, endometriosis, reactive arthritis, allergies and Raynaud's. A couple of years ago I was feeling crappy and tested mildly positive for ANA in homozygous pattern. Anyway I moved house and didn't get further help as started to improve but this year has seen the above signs again, negative ANA though. Also have constant aches and pains in body so bad that it can make me cry, exhausted all time, sleep awful and rash on face. See photo . Have now been referred to rheumatology. My pains feel more like deep tissue pain as opposed to joint pain. Any ideas/ advice /opinions? Many thanks

Hi, can anyone tell me what these results mean or possibly give me some peace of mind? 25F, chronic (10 years) arthritic pain/inflammation in all joints and apparently a butterfly rash that I thought was normal. My hair has also been falling out/thinning and breaking for months, no matter what I do.

Creatinine levels high (1.14). CRP high (8.9). Absolute Eosinophils 601. Negative for rheumatoid and sjogren's. Positive for the test titled: Lupus (12) Panel(ANA SCR, IFA W/REFL TITER/PATTERN/Lupus PNL 4). ANA IFA titer 1:320 marked as high with homogeneous nuclear pattern. HLA-B27 marked as weak positive.

I should probably mention that I'm under a LOT of stress at work. Thursday night I started to get a sore throat. Friday swollen lymph nodes & feeling weak followed. Saturday all previous symptoms plus body aches & chills followed, but no actual fever (highest temp was 99.1). Yesterday felt run down, and today I feel fine minus slight congestion. No pus pockets. Negative for COVID & strep. Could that be autoimmune related? Used to happen to me in college, too, but nothing ever came of it. Not tonsillitis either.

My rheumatologist hasn't called me back and I feel like I'm going crazy looking at my results over and over again. Not looking for a reddit diagnosis, just trying to figure out if I should worry about the possibility of it truly being Lupus or not, and I haven't been accepted to post in the "ask a doctor" group yet.

My face gets flushed looking like this every so often. I have been having high blood pressure for the first time in my life this past year and was actually just prescribed a medication for it after several months of consistent high blood pressure readings. I have also been having issues with red swollen fingers and joint pain in my fingers and wrist, sometimes hips too. I have always had GI issues my entire life and am sensitive to cold (fingers and toes very often feel like icicles). Then the past 2 years I have started having very severe recurring UTIs that have me peeing blood (and blood clots) but not always the same bacteria present, and the most recent episode showed no abnormal bacteria presence at all. Instead I had elevated protein and my most recent blood test results have also shown a high level of creatinine as well. My hair has been thinning for several years now. I’ve finally started to realize all of these things may be related, that it may all actually be caused by Lupus. I have not yet seen a rheumatologist, I have only just gotten a referral for one. Any opinions? Do you think it could all be Lupus?

Hi all,

I’m a student researcher currently working on an autoethnography about the journey to getting a medical diagnosis, with a particular focus on the challenges faced when dealing with disbelief from doctors and numerous specialists. I’m reaching out to both individuals who have finally received a clinical diagnosis for an autoimmune disease or similar condition and those who are still searching for one.

If you’re willing to share your story, I’d love to hear about your experiences. Specifically, I’m interested in understanding:

1. For those who have received a diagnosis:
   • Can you describe your journey to getting a diagnosis? What challenges did you face along the way?
   • How did you feel when doctors or specialists did not believe you? Did it affect your mental health or your approach to seeking a diagnosis?
   • What strategies or approaches did you use to advocate for yourself? Did you find any specific tactics helpful in getting the attention and care you needed?
   • Were there any particular moments or experiences that were turning points in your journey? How did these moments impact your path to diagnosis?
   • How did you eventually receive your diagnosis? What was the process like, and how did you feel when you finally got the answer?
   • What advice would you give to others who are currently struggling to get a diagnosis? Are there any resources or tips you found particularly helpful?
   • How has receiving a diagnosis impacted your life, both physically and emotionally? How do you manage your condition now?
   • Are there any misconceptions or common misunderstandings about your condition that you wish more people were aware of?
   • Did you find support from any particular groups, communities, or individuals? How did these sources of support influence your journey?
2. For those still searching for a diagnosis:
   • What has your journey been like so far? What challenges have you faced in getting a diagnosis?
   • How have you coped with the disbelief or skepticism from healthcare professionals?
   • What strategies or approaches have you tried in advocating for yourself?
   • Are there any specific barriers or obstacles you’ve encountered during your search for a diagnosis?
   • What kind of support or resources have you found helpful, and what do you feel is still lacking?
   • How has this ongoing search affected your mental and emotional well-being?

Your insights will be invaluable in understanding the broader experiences of those navigating the challenging path to a diagnosis. Thank you in advance for your time and willingness to share!

Disclaimer: Please note that your answers will be used in a student ethnography project. While your experiences will be valuable for my research, rest assured that your names and any personal identifiers will not be mentioned. The final paper will be read only by my professor and will not be shared publicly. Thank you for your participation and support!

p.s. I want to share that I also have an autoimmune disease and have experienced many of the challenges and frustrations that chronic sufferers often face. My research is deeply personal, and I understand the difficulties of navigating the diagnostic journey from my own experiences. My aim is to gather and share diverse perspectives to better understand and support those who are going through similar struggles.

Feel free to message me if you do not wish to publicly respond to this post!

It’s taken 4 1/2 years to have a doctor test me. My ANA came back positive and it’s on the severe side 1:1280. I’ve had doctors tell me to my face that I was “crazy” or “too young”. I’m so relieved to finally have a doctor listen to me after suffering for so long.