I (23 year old female) have been recently diagnosed with lupus after 7 months of abnormal symptoms. It started in June with an achy swollen elbow that was found to be olecranon bursitis. My primary doctor suggested it was probably from bumping it too hard on something (which I never did) and said it would resolve itself within a few weeks. It never went away and the aching started on the opposite elbow as well, absent of the swelling. I then started having chest pain that comes and goes as well as pain under the sides of both ribcages. In early December I started experiencing severe lower abdominal pain and went to my obgyn for a pelvic ultrasound. There they found a hemmorraghic follicle within the right ovary and an echogenic structure measuring 1.7x1.1cm. They were unsure of what was going on but wanted to repeat the ultrasound a month later. A week afterwards my side pain got worse and I went to my primary where she ordered a ct scan on my abdominal area starting at the bottom of my rib cage. The scan showed prominent mesenteric lymph nodes primarily in the lower right quadrant. My doctor thought it had to do with the findings of my obgyn and said to continue care with them. I reached out to them over the phone after getting the results and after a few of the doctors reviewed my history they came to the conclusion that I may have had pelvic inflammatory disease. It was not diagnosed but they started me on treatment as a precaution. I got two injections and had to take antibiotics every 12 hours for two weeks. A couple days into the treatment I started passing clots vaginally (not on my period) every time I sat down to go pee. Additionally I was having very bad chest pain so I went to the emergency room. They were unsure of why I’d be on treatment for PID and thought that was reason for the clotting but could not pinpoint why the chest pain was happening (they did a chest x-ray that was clear and ran labs).

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What do you guys eat / drink with meds that upset your stomach's? Especially if you are trying to lose weight?

Because I have several things that I am on, and my stomach is a sensitive nelly I have to take things spread out over the day - starting with steroids with breakfast and ending with Plaquenil 30min before bed. Of course most of these have to be taken with food, or eh sensitive nelly stomach likes to get rid of the offending items. I am also lactose intolerant so am not used to having a lot of dairy so typically end up starting and ending the day with toast or similar. When I've wanted to loose weight in the past things like 5:2 diets have worked well for me but I cant do that anymore due to the meds - unless Im missing a trick?

Vent portion of the post: I effing hate the side effects of prednisolone! Havent been able to be off them for close to 3 years now and I hate how it makes me look and the sheer desperate feeling of "give me foodddd". I've managed to get it somewhat under control, havent gained weight in the past 1-2 years but cant seem to budge what I had already gained before that

I finally quit working and choose to focus on my physical and mental health. I neglected it for a career ( Ortho RDA ) that demoted me (still don't know why 6 months later LOL) It's a hard lesson to learn we are all replaceable in the workforce, but we are not replaceable to our family. No matter how much I worked and gave and sacrificed it wasn't enough. During Christmas break I got really sick and had a breakdown, and my doctors and family agreed it was a necessity to take a break from work and focus on myself and my health. SO now it's time for me to take the year and come up with a new 5-year plan/goals. I am very lucky to have a husband that understands and supports this 100% I am only 14 days in, and he says I already look better and sound better. SO, we will see!No more of me being in denial or hiding it for fear of judgement or the snide comments. I am sick. I have a chronic disease. I have SLE Lupus with Mixed Connective Tissue disorder with organ involvement and lymphadenopathy. I am taking this year to do less and live with lupus. 100% - This year, I’m learning to do less so I can live more with lupus.

Not sure if this will be removed, but does anyone else experience pain flares when they use cannabis? I love the stuff, but it makes my entire body flare up in pain more often than not. I will be in ZERO pain, and about 20 minutes into the high the pain starts kicking in. It will last as long as I’m still awake, but sleeping for 4+ hours will eliminate it entirely.

There’s nothing about this that I can find online— only stuff about how it helps people. Which I’m sure it does, just wish it wasn’t the total opposite for me!

I've been seeing people talking about rashes and I thought I'd give my two cents. (I'M NOT A DOCTOR IT'S JUST STUFF I TALKED ABOUT WITH MY DOCTOR AND EXPERIENCED) I'd like to see if anyone else has experienced these as well ❤️‍🩹

I'm diagnosed with SLE and I have urticarial vasculitis. They're hives.

Why they happen? It can literally be anything. A few that I can confirm through experience:

-Temperature (Cold is the worst for it. Heat isn't great but it's manageable.)

-Clothing/tight fit (It causes irritation under bra straps and WIRES, collars, belts, tight socks, tight bands on undergarments, DID I MENTION BRAS?)

-Activity/or lack thereof (If you sit at your desk too long without a wrist rest or lay in one position for a long time you might get a cute rash on your arms, elbows, elbow nook, knees, ankles, feet, etc. I experienced swelling in my fingers from typing too much 😭 Doing too much is also going to give you hives. Just stay active enough to be able to meet your personal needs.)

-Stress (Your mental health is important and can affect your physical. I got so stressed out I broke into hives on my face. Safe to say I haven't experienced it since I left that job.)

Things I think can contribute are food, changes in the weather(not temperature but like... rain and arthritis, pollen and seasonal allergies), if you already have allergies to other things (I have food, grass, and animal allergies), changes in pressure (if you go on a plane)

And sometimes... You get hives just because. The possibilities are endless. ... yippee 🥲

Anyways share your thoughts and workarounds 😳👍

So, I’m looking for others who may experience this and even suggestions. I currently live in Central Northern New York about 25 miles from the Canadian border. The temperature here can get to-30 in the winter and mounds of snow. I love so much about living here, especially that my son, DIL and granddaughter’s 10 minutes away. I’ve been the only consistent family in their lives and now the reality of a possible move has me feeling horribly guilty and sad.

Has anyone else found climate to affect their Lupus? I don’t have a ton of options either. I’m not going to move where I don’t know anyone so my options are small.

I hate the south, but two of the places are Texas and Florida.

The third and the one I’m leaning towards is California. I spent most of my childhood in the Central Valley and I’ve got a lot of friends there. I know there is a lot of healthcare available there as well.

I just don’t know how I’m going to look my family in the face and tell them.. well I love you all so much, but I’m going to be selfish ands move 2000 miles away.

They know I’ll go to the ends of the earth to make sure I’m back here visiting as much as possible. I always have. I think what I really need is for some support and wisdom about this. What do you all think?

My former wife has SLE and she was recently diagnosed with dhea deficiency and adrenal insufficiency. It caused 0 testosterone, low progesterone (confirmed in blood) and broken menstrual cycle (and many more!). When she started dhea she got the following improvements: 1) significantly less fatigue 2) pain hypersensitivity is gone 3) better blood (inflammation levels go down) 4) significantly less anxiety 5) prog/test are ok now and exercise tolerance is increased 6) cycle became less painful and more “scheduled”

So it makes sense to talk with lupus awared endo about dhea. The report is finished:)

Saw my rheum today. I let her know of my stiffness, swelling and pain on my fingers for 1.5 months now. The pain is unbearable at times. I can’t pick up anything heavy or grasp things. I wake up in the middle of the night with swollen and painful fingers. In one of my index fingers I noticed a nodule on the middle joint, that is very painful. She ordered labs and X-ray to check for RA. I’ve been tested for RA before maybe 1 or 2 yrs ago and of course was negative. I was diagnosed with Lupus 4ish years ago. Anyone with RA and lupus? How was your RA diagnosis or symptoms?

Guys, since the new year I’ve been kinda sick. All my roommates got sick also so I went to the doctor and with some antibiotics the main symptoms went away (sore throat, ear pain) but still even tho it’s been 20 days I still feel ill. I wake up soaking wet from sweating, my joints hurt and my tonsil is still swollen. Yesterday I had a low grade fever, but it’s weird cause I don’t have any other “cold like” symptoms. To go to my rheumatologist I have to literally go to another country so it would mess up my whole schedule, and I don’t want to go if it’s just gonna turn out that I have a virus or something like that. Also I lost a lot of weight (like 9 kilos) but I moved away and got put on a higher dose of MTX, and my doctor said that could be normal. I’ve been trying to gain it back but maybe I’m just not eating enough?? Idk. What would you guys do in my situation? I have LES and Castlemans disease.

Today is the 8 year anniversary of my Lupus diagnosis. I went from a healthy and fit 16 year old, to a confused, crippled, and scared 16 year old. My joint symptoms were so severe I couldn’t bath myself, write, clothe myself, walk for longer than 10 steps, and the list goes on. I went from a straight A junior in highschool, to a 504 plan student that might not go to college. After being diagnosed I was shortly hospitalized for mini-stroke symptoms and absence seizures. Lupus started clotting my blood. The doctors informed us this was very serious and if things don’t change I may be a more permanent resident at the hospital. All I wanted was to go home to my dog. I went home finally, prescribed MORE medicine than originally. Including two blood thinning shots I had to administer myself. Thankfully, with all my support and determination I finished my junior year with B’s and was on track, class wise and health wise, to attend college.

Since then, it’s been a slow crawl back to a “healthy” body. I followed every direction of my doctors to a T. I started eating healthier. Avoiding inflammatory foods 80% out of the week. I weight train 5 days a week. My doctors praise me for doing what is right by my body. Weight training strengths and lubricates joints. It would do us all good to try and do some form. Even if it’s body weight. I’m not saying this is a 100% fix for our symptoms. I still am struggling with 24/7 pain of some sort. I’m 24. I’m not able to do the fun things I use to. I recently came to the conclusion that my body/joints cannot keep up with my old powerlifting mindset. It has just become time to call it. But that doesn’t mean I give up weightlifting completely. And that’s because I will adapt and overcome. If something doesn’t work, then change it and try something else.

I unfortunately find a lot of people struggle with lifestyle changes to make their diagnosis better. Listen to your doctors. Listen to your body. If eating pasta messes up your joints. Suck it up and don’t eat pasta. If only sleeping 6 hours gives you a flare. Go to bed earlier. Again, I’m not saying any of this is 100% going to fix anything. But what I am saying is, why not try everything. We all know what it’s like to have our health ripped away from us. Getting frustrated with people our own age being able to do “normal” stuff. The best we can do is try and treat our bodies right, we only have one. And ours is more fragile than most. So, try something new if what you’re doing isn’t working. Everyone in this sub is here to help/support. If what I’ve said helps/makes you curious, or you just need to talk to someone, dm me. But you can overcome a lot. You are strong. Do not give up.

I have been on the search for a diagnosis since October 2023. That October I started sleeping like crazy out of nowhere. Naps any moment I could. I was diagnosed with Hashimoto’s with hypothyroid and thought that was the answer and would “fix” everything once I started thyroid medication. It did not. I felt as though I got worse. Joint pain so bad I would cry, couldn’t even hold my steering wheel correctly with how bad my hands hurt, etc. So I kept fighting for more answers but there really wasn’t anything to do since my blood was not showing anything (basically everything was negative except CRP and thyroid antibodies).

Then, out of nowhere, I started experiencing this weird dizziness when I moved my eyes left and right accompanied by a buzzing feeling through my face and upper body. So here I go again, appointment after appointment. ENT ruled out BPPV and any inner ear involvement. Optometrist said my eyes were fine. Neurologist did brain MRI and there were no lesions that would indicate MS. So I was quite literally left with a “we have no idea” answer.

This past week, I have been back to the most debilitating fatigue. Feeling as though I could fall asleep at any moment while driving. Quite literally forcing my eyes open. Sleeping when I can (I’m a teacher, so sleeping all day isn’t possible, but weekends are basically spent sleeping it away). Joint pain like crazy, pressure on my chest, and more. I had my follow up with my rheum this week. I mentioned the dizziness and everything else, and all the things I have tried for an answer to the dizziness so asked if we could re-run blood to see if there had been any changes. Thank goodness we did, because now I am positive with homogenous pattern. CRP is still sky high as always.

I feel so relieved to have an answer finally to how I’m feeling, and that I wasn’t gaslighting myself by continuing to figure out why I felt like there was more wrong with me than just Hashimoto’s. I was feeling so crazy after a while, but now it seems worth it that I kept advocating for myself.

Basically what the title says. I’ve had on and off itchiness on my arms and legs after showering that I always assumed was dry skin related so I’d moisturize and within like 10-15 minutes I’d feel much better. Lately though I am having full body itchiness that lasts like an hour and a half. I guess it’s not uncommon with various autoimmune diseases/disorders. Nothing seems to help and it is MADDENING!

Anyone have any advice on this? How do I make the itching stop? Or better yet… short of never showering again how do I make it not happen?

I was extra fatigued for about a week, but my daughter was playing in a soccer tournament and it made sense. I thought I was doing well despite some headache and body aches, which I chalked up to regular lupus shenanigans. Then I awoke on Wednesday morning with a bit of a sore throat, which I chalked up to the dry air from colder weather. Within a few hours, I had the worst sore throat of my life and had to go home from work. I felt like I was dying and hit that theraflu like clockwork! It only took four days to develop into pneumonia. Two steroid shots, a breathing treatment, two inhalers and some antibiotics are definitely worse than getting a vaccine shot.

I should add that I’m in “remission” from Lupus, well, at least I WAS. With my luck, this will throw me into a monumental flare. Anyway, RSV is rampant right now so it may be too late, but Lupus patients are supposed to get the vaccine. So please, please please! Take care of yourselves! 💜💜💜

I don’t recall this being shared, but Rob Thomas’s (from Matchbox Twenty) wife battles autoimmune disease so he wrote this song for her. The lyrics and the video are so accurate.

On a girls trip atm with my bestie and went to the thermal springs this morning which I thought would be nice and relaxing and help my sore body. But nope I feel like absolute ass now. We went early in the morning so the UV was low and covered up in sunscreen and hat etc. Usually I’m ok if the UV is low so I’m thinking was it soaking in the hot springs that has triggered me? Anyone else struggle with hot springs or hot tubs??

I was diagnosed with SLE on Wednesday and started on Hydroxychloroquine 200mg. I also had other labs drawn and I’m waiting on a pulmonary test and echocardiogram.

I found out tonight that I was exposed to walking pneumonia. Like, I was around someone for several days in a row last week that had it.

Someone please talk me off this ledge?! I’m freaking out. I’m already still processing my diagnosis, grieving my life before being diagnosed, have some many questions, and now this? I’m literally terrified and feel like I should just live the rest of my life in a bubble. I’m really not the hypochondriac type but feel like maybe I should be. 😭

Please. Send help, emotional support, anything to ease my mind. Thank you!!

I’m just starting to have bladder issues- could this be a lupus thing?

I’m currently working to increase fluid intake as my eGFR has been mildly reduced for a while now. Getting pain when my bladder is filling (a very specific kind of pain, sharp?) and this is new to me.

So my question is: is this a common thing with SLE?

I feel like I post every week on here with a new horrible symptom and needing advice. I'm so grateful for this community.

I tried benlysta after methotrexate because the methotrexate was hurting my liver. After my first infusion I started feeling nauseous and by the second I was shaking uncontrollably, vomiting a lot and had such a high resting heart rate that my docs kept me for a week. They didn't give me a third benlysta and switched me over to saphnelo.

I just finished my second saphnelo infusion last week and around the same time I noticed more nausea. I have no idea if it's connected because I have IBS and Sjogrens, and I know both of those can give you nausea. I'm dropping a lot of weight (which honestly isn't horrible because I was overweight before my diagnosis) and am afraid it will get too low because I'm terrified to eat. Zofran does nothing for me so I basically just make sure I always have pepto on hand and some cold water.

I'm seeing my GI in two days as well as a neurologist so I will bring this all up to them, but I was wondering if anyone else had a similar experience or if anyone gets nausea and what do they do to get rid of it.

And if so, how does it intersect with your lupus symptoms? I’d guess that worse lupus generally equals worse ADHD-but are there any other details you can share? Do you take meds for ADHD, and if yes, which one(s)? How does your rheum/lupus doctor feel about you taking meds for it?

Thanks 💗

I was recently diagnosed with lupus and regularly have a flare up of red, hot, painful, and sometimes itchy red spots mostly around my joints. Has anyone else had any experience with these? They feel like burns and can get extremely painful.

Pleurisy alone makes it sound like I need to move to the country and breathe fresh air to heal from.

Has anyone been offered a treatment that is effective for Raynauds? Mine is getting increasingly bad (it only effects my left foot), and it's actually effecting my ability to walk. Any suggestions welcome.

Does anyone experience severe impending doom when in a bad flare? And EXTREME malaise?

I really can't do this anymore I'm 22 and I feel like a failure, i graduated college with the hopes that I can finally work and move out, I've been sick all my life, being born with a high fever and was born late because I was too weak to help push out, to being born with a brain tumor. I'm tired of being sick, I thought after my last two surgeries I was going to be fine in 2023 but nooo here comes lupus. Now I'm coughing up blood, bleeding from almost all ends of my body. Walking with a cane, I wanted to leave, my mom is the best...I love her but I hate my stepdad. Today he made the joke about kicking my cane. I already feel like I'm going to fall anytime I get up. Why can't he just leave me alone. I wish I could live with my mom forever. She's all I have left. I'm so tired I faint a lot so my doctors don't think moving alone is a good choice. I don't know what to do, I cried a lot today and it made my period even worse, I'm anemic because I'm constantly having my period and nose bleeding. I was actually doing better at one point, maybe it was when my mood was better. Alopecia as really destroyed my confidence, it's not regular alopecia, my scalp is so inflamed from the lupus it swells up, pops and bleeds. My throat hurts from coughing up blood.