I feel like no one in my life understands what we go through with this disease. The pain, financial struggles, not wanting to complain. Wanting to do normal things, but physically or mentally not being able to. I feel like I have no one that knows every aspect of the struggles.

What are some things you do that help you in your daily life living with lupus? How do you cope with feeling lonely or defeated?

I am 20 y/o female with lupus

I am losing my will to live, I’m like basically bed ridden. I can’t get out of my bed, can’t eat, can’t leave my house without feeling like shit. I have no energy like genuinely at all, I feel like shit every single day. What’s the point of living if every day I’m going to be in pain. I almost wish I just lived in a hospital so I can numb the pain and lay in bed all day. I feel like I can’t do anything without feeling sick but then again if have no energy to do anything. I’m exhausted all the time I can’t even clean or do ky laundry.

Hi, I’ve got SLE + DLE and I’m really struggling with dry skin atm. Do you have a fav nourishing body moisturiser you’d recommend? Tia

It's been 12 years of confusion, unexplained symptoms, fighting doctors, and lots of pain. Finally found a doctor who LISTENED (after dozens who certainly didn't), and today, we officially confirmed after lots of testing, that I, in fact, have lupus.

I'm honestly relieved that I have an answer now, and we spent an hour coming up with a game plan. Meds, follow ups, additional testing, iets, lifestyle changes... The works!

So... Hi everyone! 😁 Could you all please leave your best tips or suggestions on how to make sure live my best life with lupus? Thank you all in advance. I'm grateful to have a community like this. I am remaining positive and hopeful! 🌞

Hi all,

I’m not sure where or who to ask, so I thought maybe this might be a good place. Hopefully it’s okay to post as a family member. I obviously don’t want to go into his personal history, but suffice to say it’s been years of him feeling wrong, and it escalated to a point where a doctor finally took him seriously to test for lupus. Confirmed yesterday. I can only imagine what he’s going through.

I’m posting because I just… don’t know what the best or right things to do for him are. I’m worried for his physical and mental health, I’m worried for the future, I’m just generally feeling uncertain. But this also isn’t about me. I committed to this in sickness and in health. It’s good that these symptoms have a name - but now what?

I know illness is personal and everyone is different in the support they need so there’s no “right” way to do things, and I am talking to him about it, but… what would you want a partner to do, or know, about your diagnosis? When you were diagnosed, is there anything you wish your partner had or hadn’t done? Going forward, how can a partner help? I love this man. We’re nearing 15 years together and whatever the future looks like, I want to be the most supportive that I can.

Hopefully that made sense? Up until yesterday the only thing I knew about lupus was that “it’s never lupus”, per HouseMD. I’ve got a lot to learn, so literally any nugget of advice or random tip would be appreciated a lot.

Idk if this is the stupidest thing in the world, but is it possible to build up tolerance to the sun?

I used to be such a sunshine child and I know it sounds stupid but when it’s beautiful out and I can’t go out it really hurts my mental health. I just feel like I need the sun. I crave it. But if I go in I get a massive red rash especially malar. It burns and blisters and is the worst.

But is there anyway to grow a tolerance like a tan? Could I be miserable for a could weeks and then work to enjoy outdoors again? I feel like I’m losing my mind indoors and don’t know what to do.

Hello,

After being a super outdoorsy child and growing up in a tropical climate, I've had to accept that with the lupus I'm now extremely photosensitive. All the lupus info I've seen on sunscreens has been US-based, and they tend to recommend mineral sunscreens only. Is this just because US sunscreens are terrible, or is there a particular reason why? I live in Europe and have access to amazing European and Korean sunscreens and would hate to have to make the switch...

Has this happened to anyone else? I’m so confused!! 😵‍💫

I use the same products every single night. Cerave (face wash, under eye cream, retinol) for years, and vanicream moisturizer for the past 4 months.

But tonight, I have chemical burns on my face from it. (I’m fine, I’m just like wtf😅)

Are there products or ingredients we’re supposed to avoid? Has this happened to anyone here?

Thx 😅

my partner used to be very understanding but has since forgotten it feels like that i am sick, in pain, and out of it constantly. because my doctors won’t put me on biologics yet i am still struggling very hard every day. most days i don’t want to get out of bed but i do. he has adhd and has trouble doing tasks. so my home is constantly a mess. i try to juggle the mess the best i can, i can be a mess too. and i try dealing with the mess gradually and as much as i can throughout the day. some days i just don’t feel great and am in a lot of pain. and those days are when my place gets messy because i can’t function well enough to do the laundry or vacuum up heaps of dog fur all day long. i do pretty much everything. today he decided to clean the laundry area and told me i need to manage it better and finish cleaning up the soil i spilt (the laundry is in the garage) on the floor in there too. he had cleaned most of it and he cleaned the laundry area. it’s hard for me to even think of the dryer sheets that fell on the floor or the jugs of washing liquid i need to throw away because i have so much inside of my house to clean everyday. there are things i say i will come back and do that and i totally forget to do it because my mind becomes occupied with new things to clean up or do. do any of you have partners with adhd? how can i make him understand my brain is fuzzy and my body is failing me? how can i ask him for help managing tasks with me so i’m not doing it alone? i always try to help him with things he needs to do but it’s really hard for me to get him to help me with anything i need help with. it’s hard for him to just do the dishes before they pile up because his head is somewhere else. i don’t know what to do, any advice?

I’ve been taking HCL 200mg for three months now. I noticed something happening to my nail. The rheumatologist thinks I just hit it on something but i swear I didn’t. It’s so painful and it has a crack in the white space

I started methotrexate and apparently, you're not supposed to take NSAIDs and methotrexate together, but I find NSAIDs help period pain the most. I'm trying Tylenol, but it's not as effective as Ibuprofen in my experience.

Medication-only recommendations if possible, please! I don't smoke, and oils don't work for me. Alternatively, do any of you also on methotrexate take NSAIDs just fine?

Yesterday, I actually had a high-grade fever when I woke up, but shockingly I didn't feel anything much - no cold sweat or chills, which were some of the symptoms I experienced previously. Only symptoms - which I looked past was the tiredness and muscle ache and tenderness throughout my whole body which had actually been going on for about a week (chalked it lupus things). My husband and I only realised when he hugged me, and got a shock at how hot my body temp was. Anyone experienced similar before? It's kind of scary how we patients normalised these feelings, to the point we just brush it off even though it could be something more iffy.

Well this was a new life changing information I just received from a close colleague! Amazing news, we dont need muscle relaxants and painkillers. Just try the Shavsana yoga pose! Aka lie down flat on your back and close your eyes - magic! Why couldnt all the specialists have told me this sooner, game changing you know

Jokes aside, how the fluff do I react to comments like this? A close colleague literally told me to try the corpse pose / shavsana instead of taking my meds...

I'm on a prednisone taper, and the last two weeks I've noticed the malar looking rash. It's very hot and feels almost like a sun burn, it looks like it might have gotten worse in the last few days. Is this something I should contact my rheumatologist right away about?

I’m looking for a good health insurance in California and this one comes up often as a recommendation so I wanted to know y’all’s thoughts as well.

Hello everyone, I’m just curious about getting a tattoo with lupus. I have a lot of large tattoos on my body but have not gotten one since being diagnosed last year.

I’m worried about the immune response when healing the tattoo. Do tattoos typically cause flares?

I appreciate the tips, shared experiences, and other thoughts. TIA

Hey guys! I just wanted to know if anyone has had any luck taking female hair regrowth supplements like Hers brand offers? I recently had my hair extensions removed after my lupus became active again 6 months ago. The amount of hair loss is insane and I am so sad. My hair has always been one of my favorite features. Sad, I know. But does anyone have recommendations for more than just biotin? Thanks so much for any help!

Obviously we have to get our eyes checked and it’s gonna vary person to person but I’m nervous as my 5 years run out soon. I would love to hear how long you guys stayed on plaquenil without issues. Just to feel better about it idk

Does anyone also have hyperparathyroidism? I was just diagnosed with it.

I’d like to escape but I can’t break free I need to be rid of what torments me

Chained and bound, gagged and bled All for trying to put one foot ahead

She lurks in my shadow ready to spring If I dare to laugh or have anything

To try and smile, or live in peace Or hope for joy without surcease

This one who shares my body now Is dark and evil, cruel somehow

She waits until I’m already crushed Leaving me broken, red, and flushed

She makes the sun my enemy No more beach days to enjoy the sea

Not without SPF 100 can I go outside Or UPF50 clothing, sunglass-eyed.

Waking each morning, one eye just to see What hurts and feels shattered inside of me

Willing myself to move just one hand Then just one elbow, both knees and to stand

Waiting for gravity to pull down on me This demonic shadow weighing so heavily

Head is throbbing, feel it to find Multiple lesions, angry, red-lined

Stings in the shower, the ulcers they sing From where the demon pressed her ring

Not just my head but arms and face too I look like patient zero, and a bit of a shrew

I know not where the classically pretty girl went Who wasn’t beautiful nor heaven sent

But passably pretty, like from Renaissance time with a joyful disposition, personality prime.

She died back in 2021, I’ve not seen her since the demon

I remember what things were like for her How she took for granted what she hadn’t had to endure

How she didn’t know it could be so much worse How there would be nights she’d wish to leave in a hearse

To try anything to escape the broken shell Wishing irrationally for even a spell

Because I can’t do this anymore I can’t wake up and feel so sore

I can’t keep burying what I cannot reveal Just so those near me don’t feel

I close it up tight in a small box Away from my daughter, and strong as an ox

Until I’m alone at night to sleep And all of the box explodes all over me

It leaves me brittle, a fallen autumn leaf Shaking, and quaking, without relief

Hoping fruitlessly, just like the last That tomorrow she might be free at last.

As the title says. I'm on 400mg of hydrocychloroquine daily. I'm going to be taking a vacation in a few months to a part of Africa where malaria is endemic. I'm just wondering, do I need to start taking an additional anti-malarial when I go, or am I already protected by the hydrocychloroquine?

Edit: I am absolutely going to talk to my doctors about this, but I just wanted to come in with some information and not start from scratch.

I've been struggling with tedonitis all over for actual years now. I went to PT multiple times and even started going to the gym. Sometimes it improves, other times it tanks bad. Lately, after a yoga class of all things lol, it's gotten BAD BAD. Like I can't walk without severe pain sort of bad. It's been days of pretty bad pain in my hips, hamstrings, and thighs, I haven't been able to go to work cus the walking is, horrifically painful. I can't bend or sit without trouble. I went to see my doctor yesterday about it, and he just recommended taking more NSAIDs to get it to calm down, but it's not working.

I need help. What else can I do to get through this pain? Like I can't even walk, and even i do it feels like it sets me back even more 😭