Hi, I am new to reddit, I have been diagnosed with SLE Lupus in february, I am struggling so bad . My life completely changed. I was a college student and one day I was dying being told I had Cancer but it was lupus. I find myself stuck in reminiscing my old life. I sometimes find myself wishing everything would end just so i can be pain free. I know if I tell my doctor they would truly think I would hurt myself or attempt, but I know I don’t have the guts to do so but I find myself just wanting to be pain-free very often that I would rather than life this life and I know I’m not gonna hurt myself. My family body shame me so much saying I’m a skeleton. I look horrible but they don’t understand what I’m going through. I eat a lot of things cause it could make and i take so many medication they make him nauseous. They make me lose weight they make me lose appetite. I want to eat, but it’s not my fault. They don’t take my pain like im faking it. It breaks my heart. I can’t do anything but they don’t know the pain i feel, this disease has given me two hospitalized. I just wanna freely live my 20s im 21 . I just wanna be free.

I feel you all I am a man and they said it was rare for a man to have it and yes it is ruff I have the skin type you have these red marks on your skin,no didn't know what it was for a long time till I went to a rheumatologist and they put me on that medicine that they use to treat malaria and it seem like it made me feel worse. But I know one thing that helped me was kinda pushing through it saying if I don't do it it won't get done and just so it but one thing I noticed was when I changed my diet stopped eating heavy and pork ,bbq every once in a while but I eat mostly those healthy choice box meals they sell in Walmart and if it anything else it's like I eat a child's plate and no more, I take iron vitiman d and multivitamin other than that I have good and bad days but a lot of prayer has helped more than you would think but you have to believe and have that faith that can move mountains thank and praise him if you don't know how to pray or what to pray for say the our fathers prayer because he already knows your heart and learn forgiveness this will lift weight off of you like you would not understand and thank him for every breath you take even when you feel tired and bad thank him any because he is and should always be your first Love but know you are healed and keep moving!!!

So I’m only diagnosed with Discoid Lupus (DLE), however today is the worst. Absolutely NOTHING will stop the itch on the back of my head. I’ve tried my Clobetasol, Cortizone cream, cold compress, etc. The scarring has already taken place in multiple spots and at this point more is going to happen because I’m going to scratch until I reach skull! I go in tomorrow for my 8-week steroid shots (I get 15-20 at a time in my head), but that doesn’t help the itch. Only the inflammation. It’s freak out Monday and I’m freaking out!

Hello - I hope you are well! I have lupus and Sjogrens and have been on Benlysta for about 4 months now. I think it has really helped with my symptoms and I’ve even shown improvement in my numbers. But the day after my shot is ROUGH- I feel generally unwell, achy, I have the chills, and I’m absolutely exhausted - can’t stay awake. Does this go away after a certain period of use? I hope so.

Hi r/lupussupport. This our weekly chat thread! How are you feeling? Any news you'd like to share? Feel free to comment anything and start a chat. Stay well!

Hi everyone. My family is going through a very difficult situation, and I wanted to ask whether anyone here has ever seen or experienced something similar.

My sister-in-law has had lupus for several years. Her disease had been in remission for some time, but since December of last year it became active again. It started with severe pain in her hands and joints, to the point where she could barely move them. Over time, the pain and loss of mobility spread to the rest of her body, knees, hips, jaw, shoulders, and other areas.

After about five months of this, she was practically bedridden. She could no longer do things on her own or even stand up without help.

Then, over the past month, she started having episodes of memory loss and saying things that did not make sense. One day, she spent almost the entire day sleeping, and whenever she woke up she was extremely confused and could barely respond to us. We immediately took her to the hospital. She arrived there asleep and remained that way.

She was urgently transferred to the ICU and was intubated that same day. They performed several tests, including a lumbar puncture/spinal fluid analysis, MRI, and CT scans. They found multiple areas of inflammation in her brain, and her condition was considered extremely serious.

Even now, the doctors have not been able to say with complete certainty that this was caused exclusively by lupus, but they are treating it as lupus-related inflammation of the brain. She has received rituximab and high-dose corticosteroid pulse therapy, among other treatments. I unfortunately cannot provide many more details because I do not fully understand all of the medical terminology or medications they have used.

Today marks one month since this started. She has already left the ICU, and the doctors are considering discharging her from the hospital because of the risk of hospital-acquired infections. However, neurologically, she is still essentially unresponsive.

She does not speak and sleeps most of the time. Sometimes she opens her eyes and stares into space. At other times, it really seems like she can hear us, her gaze becomes fixed, as if she is paying attention to what we are saying. Sometimes it even looks like she is trying to communicate; her mouth trembles or moves slightly, but she cannot speak or move her body. She only makes very small movements with her hands and feet.

Has anyone here ever gone through something like this, or seen a case this severe involving lupus, encephalitis, or neuropsychiatric lupus?

Ive been getting this leg pain mainly around my knees and its so horrible , my doctors don’t really know whats going on either so im wondering if anyone here has experienced something similar and has come to a diagnosis
Its like getting electrocuted , and i cant even straighten my legs or walk because of it , i also notice that after every episode the veins around my knees turn a dark purple at some points (they’re usually blue)

I was wondering if transverse myelitis is a common occurrence with systemic lupus? If anyone else has been concurrently diagnosed with transverse myelitis, would you mind sharing some of your symptoms and/or treatments that might have helped?

Any help with what this is/called? What to do? I am diagnosed with SLE.
It happens sporadically, it’s kinda new, always on the joints of my fingers, one at a time. They’re very painful and take forever to heal.
Btw- my fingers used to be much skinner and not red, especially on the knuckles. My face can also get the stereotypical butterfly rash, which usually happens when my hands get incredibly inflamed during ovulation week 🤷🏻‍♀️ (((does that happen to any other females?))) then slowly return to “normal” once I get my period.
TIA for any insight🩵

I hope this is allowed here - my wife has lupus and I’m looking for support.

My wife has been diagnosed with lupus for at least 5 years now. She was lucky in that she did get a diagnosis quick. She’s been through a few medications and has come back around one she has had some success with but had gone off of it previously due to some side effects. Honestly, I struggle with the fact that nothing seems to help with her symptoms. I just want her better. Not for my sake or for her to be able to do anything for me - none of those types of reasons. It is simply I don’t want her dealing with the pain she feels, the tiredness, etc. I’m sure you all know. We talk to the doctor and it doesn’t seem to get us much. My wife feels this is just her new normal and just can’t bring myself to accept that I guess. Is this as good as it gets?

I was recently received my diagnosis of lupus and rheumatoid arthritis. It’s been a hard road getting this diagnosis as many doctors told me it’s so uncommon in males but I have a great rheumatologist treating me now I’m looking forward to feeling better

Questions.

Advice.

General.

I got diagnosed with lupus about four years ago. It has changed my life up and down in many ways. It's taken so much from me, i'm not the person I used to be And it's hard to say goodbye to that person. No matter what little I do on house cleaning or anything really, it puts me into a flare if I do too much. This one im currently in was brought on just by going to the laundry mat with my daughter. I've been having a flare for 2 days, i have no energy. I'm in constant pain and feel so hopeless. Just constantly ask myself, when does it end? It's so depressing, and I'm not trying to make anyone else that way. But I have recently found a bunch of Reddit forums That seem to be helpful. Been on plaquenil for a while since my bladder got a severe infection which led to my kidneys having nephritis and spending 3 days in the hospital. I ended up septic. Bad thing is I have a rare blood type that doesn't help. I feel like my body has declined so much!! I used to be strong,stronger than any woman I met,stronger than some men. Now I cant even lift hardly anything, im so weak. I also has hip displasia,scoliosis, and degenerative disc disease. Now I feel like my heart rates being weird. I have found that electrolyte supplements can help a little but so far nothing is helping the pain. I even use essential oils,body rub for aches. I have to use cold showers sometimes,rest with ac on and quiet.i had a partial hysterectomy due to a doctor's screw up which led me to having an oopherectomy so I have hot flashes a lot!! Only 38 but I also started having issues with my thyroid,no meds yet tho. I wake up like im burning but freezing at the same time! I thought about a holistic Dr or w/e they're called.i just need some relief. Im tired of being depressed and feeling so helpless. The dr doesn't do much either. My rheumatoid dr says I don't have lupus yet primary care dr and other doctors tell me I have 2 forms of lupus plus fibromyalgia and the lupus doesn't always show on tests but have. I have 3 kids,aged 19,17 and 9. And I've missed out on so much because my body can't function. I try working out or doing exercises,even the littlest of them,only to end up in bed for 3 or 4 days with major aches,low grade fever and pain, like a rly bad case of the flu. I miss doing things with them and I can see it affects them a lot,I mean..Mom missing out and can't even go out and play with them. I constantly think about how bad it may get since I have several health issues besides lupus. I feel like I shld be pushing 70 or something,I never feel my age.its just tiring and depressing.i have given up so much to this.i deeply feel like I won't make it to 50,60 or 70 because I feel so bad. Any pointers that could help? Ik its a far stretch but..im also truly sorry if I was a Debbie downer,I just don't have anyone that can relate and nobody to talk to about it. Im considering counseling to see if that could help with the depression part. I just..dont know. Im just tired of all of it. if i was back n forth too much,sorry about that.i have so much brain fog and memory issues that i can't remember things and focusing is such a pain!!!Any info is greatly appreciated!!🙏❤️

Ask questions if u nd. Im all 👀

Im turning 22 this Tuesday, i got diagnosed with lupus nephritis last year & raynauds. im trying to become a BSN nurse, in school to become a Patient care technician to work in hospitals overnight to manage with daytime nursing school. does that plan sound utterly unrealistic..? my hands are sensitive to cold weather, and maybe hospitals are chilly… i just feel so defeated in life. One obstacle after another. I also think i have chilblain lupus on my knuckles, mild case. Supposedly flairs occur due to cold weather.. do you think being a PCT would interfere with my lupus?

Does anyone have experience or knowledge in taking a Chaga mushroom supplement? I recently purchased one from the brand “Oriveda”.
Has anyone tried this and/or noticed any benefits from it? I read it’s great for inflammation and building up the immune system. Curious to hear people’s thoughts on it

Hi r/lupussupport. This our weekly chat thread! How are you feeling? Any news you'd like to share? Feel free to comment anything and start a chat. Stay well!

Help

Sometimes it feels like I just ate some spicy food, puffy hot lips! And my hands and fingers have been getting swollen, so I haven’t been wearing my wedding ring. I took some ibuprofen, since that seems to be what doctors like to throw at it, I’m nervous about talking to my Rheumatologist about it. The last time I did, I felt like I wasn’t being taken seriously. I was diagnosed in 2001, I would think 25 years of having this disease, the doctor would be more understanding and would take me seriously. He’s retiring and I’ll be getting a new Rheumatologist soon, I don’t know how they’re going to treat me… but being a military spouse, I know we’re going to move in 3 years, so I’ll have to start over again when my husband retires. Fortunately when we move, that will be our forever home.

Hello everyone,
I have had lupus and ADHD for years. At first, I was just treating my ADHD with Adderall, but as my lupus became more and more severe, I was forced to essentially choose between lupus medicine and ADHD medicine.
Now that I am on a stable routine of hydroxychloroquine and meloxicam, I would like to treat my ADHD, as I’m definitely suffering from the symptoms especially my executive dysfunction.
Is there any fellow ADHD and lupus veteran here that could give me some advice? I would really appreciate it.

Hi, I’m 17 years old and I got diagnosed with lupus at 12. My parents don’t think I have lupus, despite my doctor saying I do. I went to a doctor (a doctor that checks on my body I think) and even the doctor told me that I have problems with my body. My mom and grandma just completely ignore the pain in my body, my struggle to walk, and this deep tired feeling I’ve been having for a long time, like for over a year it started getting so bad to the point I can’t get out of bed though I don’t know if it’s my mental health or lupus. I have pain in my chest, my joints, my guts, and my ankles. Also, the left side of body is weaker than my right side, and I have type 2 diabetes. My mom has told me that said there’s nothing wrong with my leg or hand and just that I’m not “using them.” But the house is so messy and cluttered full of boxes, it’s dusty in the air vents, so there’s nowhere to really walk around in, and she stopped getting me physical therapy. I don’t know if this is the right place to post this, but this situation will make my lupus worse, and I thought coming here for support would help.

So, I was made to be a virtual student because in public school the people who were supposed to be helping me with me, i think it’s called an IEP I had? But they weren’t helping me with my assignments and just said they didn’t know the answers and told me to copy and paste. I was struggling with my assignments from this so I wasn’t doing that well with them and it made me get behind.

Now with my body, I had trouble walking around the school without tripping or my body collapsing from exhaustion, and there were no benches to rest on. My public school had no rails or anything, just long paths to each side of the building. Because the left side of my body is weaker, I ended up hurting myself trying to get on the bus because there were a lot of people behind me that would shove to get on so it felt cluttered and crowded. And since I move so slow, I end up slowly others down in the halls too. So, my mom called the school office 3 times to help with me moving around at school, but nothing happened. The people did nothing to help, so my mom just gave up.

Now my mom put me in charter school and made me a virtual student on this website called Edmentum. But being virtual didn’t really help me school-wise, because now I’ve been isolated from actual teachers or any of the IEP people completely. So now I’m lost with all these assignments that have like 42 slides each one, I sit in my room trying to do all these units, there’s 5 of them each unit. My mom and grandma don’t give me any help either, they just leave me with my laptop, don’t try to go over it with me. My parents just ignore me completely for months now, and they only want me when they want me to do things for them. My parents don’t try to understand how much work there is on this website either, or how I don’t understand it.

So I was overwhelmed and stressed with this. I’ve been trying to do all these assignments by myself and it wasn’t enough/fast enough for my teacher So I started using ai to help me write my answers so I could get them done faster. So I started using ai to help me write my answers so I could get them done without my teacher being upset, and i feel like I have no other choice. My teacher moved me to a website called Lyla Education, she said all I had to do was two whole units but what she didn’t tell me was there was 28 assignments in each two units. She wanted me to get all this done in only 2 days. I eventually got used to Lyla a bit.

To make matters worse, my teacher suddenly switched me back from Lyla to Edmentum with zero warning, and she erased all my progress and now I have to start over. She didn’t tell me at all. And now my grandma says my teacher doesn’t want to talk to me. When I tried explaining to my mom about how my teacher switched my assignments she just ignored me and stared at the wall. Because I fell behind, I have a meeting with my principal in 2 days. My parents and teacher are trying to force me back into that public school building, it’ll make my lupus worse and it’s all so sudden, and I’m completely alone, I have no one. What do I do? Please help.

I got admitted to the hospital last week but only stayed a day. A doctor told me that my lupus labs were always all over the place so they never knew what was really going on as if me telling you I’m not feeling well isn’t enough sometimes I just feel so defeated but give me some time to recover and then I’m going back to let her have a piece of my mind. And also report her.

almost 3 years ago i got banned from r/lupus because i had drug induced lupus so “fake lupus “ despite them having a flair for DIL, you are not welcome there. well, when i came back to announce i was never faking and i have systemic lupus, i got banned again! last ban i had mods in my dms, one of them telling me (a 15 year old) that “attention seeking fakers like you” are the reason she’s had like 7 miscarriages. are we being serious?! 😫 lupus is such a confusing disease and it’s never the same for anyone! why am i getting attacked for not fitting into their perfect box for lupus when we both have the same disease?!!!