r/lupussupport

Got diagnosed last June, I’ve done construction my whole life.. now I can’t get sun and my body just doesn’t recover like it used to.
I can’t go be a cashier or something along those lines because of how low the wage is.. what am I supposed to do? I need money to live. I’ve made good money my whole life, now I can’t because of lupus. I don’t know what to do… any advice or comments would help.

I’ve thought about disability but I got denied

Hi guys, I was wondering about tomatoes i seen that tomatoes are not good if you have lupus , but i love tomatoes and was wondering if people actually flare or its like a depends on person?

My fiancée lives with chronic illness, and I’m trying to learn how to be a better partner and make life a little easier and more comfortable for her.

For some context, she has lupus, ulcerative colitis, and a long list of other “my body doesn’t work right” issues. She’s been struggling quite a bit lately, especially with feeling comfortable enough to sleep. She’s exhausted, but has a hard time actually getting comfortable and resting, which obviously makes everything else even harder.

I know I can’t fix what she’s dealing with, and I don’t want to fall into the trap of constantly trying to “solve” something that may not have a solution. What I do want is to understand what actually helps.

For those of you who live with chronic illness, or partners/caregivers who have learned along the way:

What are some things your partner does that genuinely make your life easier or more comfortable?

I’m especially interested in the little things that someone who isn't chronically ill might not think about. Things around the house, ways to make bad days easier, thoughtful gestures, ways to offer help without being overbearing, or ways to be supportive when plans have to change at the last minute.

And honestly, I’m looking for anything that might help with physical comfort. She often has a hard time getting comfortable and isn't sleeping much right now. Are there things you've found that make a noticeable difference? Special pillows, blankets, clothing, heating/cooling things, ice packs, mattress toppers, certain types of pajamas, little comfort items, etc. I’m willing to try just about anything at this point. I'm not looking for a miracle product, just those random little things that you discovered made life 1% easier.

I’d also really appreciate hearing about things that don't help, even when they come from a good place. I want to avoid unintentionally making her feel like she has to explain, justify, or apologize for how she's feeling. I’m learning that sometimes “trying to help” and actually being helpful aren't necessarily the same thing.

I love her very much, and sometimes I feel pretty helpless watching someone I care about struggle. I know I can't take this away from her, but if there are things I can do to make the difficult days even slightly more manageable, I want to learn.

I’m not looking for medical advice or a cure. I’m really just looking for practical advice, comfort ideas, and the things you've learned through experience.

What do you wish your partner had known sooner? What little things make a bad day a little less bad?

I’d genuinely appreciate anything you’re willing to share.

Recently diagnosed with CLE and SLE. Rough summer! I’m on week 3 of HCQ at 400 and tapering down prednisone right now. I’m at 20 for another 5 days. My question I am hoping someone can help with is my skin! Omg my hands are just awful. So so so inflamed—cuticles on fire. I can’t touch anything. Debilitating. So sensitive. I’ve been working with my dermatologist and have clobetosol and tracoliumus—feels like neither help. Anything else????? Swollen k fingers/knuckles as well.

Hi all. Just venting. Been the worst summer of my life. Got diagnosed with CLE and SLE and started HCQ about 3 weeks ago. Been on pred since early July and tapering down now. Currently on 20 for another ten days. Every freaking day I’m waking up with new crap—-today—-swollen knuckles. My skin on my hands is awful, sooooo sensitive. Can’t use them without gloves and my arms are so weak and warm when I wake up. I’m so over this. I am 41 with two elementary aged kids. I miss my body. Waiting for hcq to work is really hard and this morning I just can’t stop crying. Just pain and annoyance. Trying to pack and clean and I can’t. Anyways…..thanks for listening. I’ve read so much in this group and it’s very helpful. I didn’t even know what lupus was till this summer.

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’ve had lupus since I was 6 and was diagnosed when I was 14. I had some really rough days growing up, especially at school, but I always tried to keep a positive mindset and push myself to do better.

I went to university, studied Accounting and Finance, and eventually graduated. My parents supported me throughout everything, and I was really looking forward to the day I could finally become fully independent, take care of myself, and be able to support my family too.

Long story short, I found a corporate job as an accountant, and I quickly realized that physically, I just couldn’t do it.

I would come home crying, completely swollen and exhausted. There were days when I could barely type on a keyboard because of the swelling, and when I stood up, I could barely walk. It felt like my own body had betrayed me.

And honestly, I’m devastated.

Lupus has already taken so much from me my childhood, opportunities, and some of the dreams I had for myself. Now I feel like it’s affecting my mental health too.

Where I live, remote jobs aren’t really an option, which makes everything even harder. I worked so hard to get my degree because I thought it would give me independence, and now I’m struggling to figure out how I’m supposed to build a career when my body won’t cooperate.

I don’t really know what to do from here.
For those of you who have lupus and had to change your career or give up a job because of your health, how did you figure things out? How did you deal with the feeling of losing the future you had planned for yourself?

I’d really appreciate any advice or even just hearing from people who have been through something similar

Has anyone with lupus ever had Botox? I’m generally not a fan of putting foreign substances in my body, but I’d like to also try to go a non-surgical route to look younger. But I don’t want to use Botox and then have a flare. In the past when my disease was less controlled. I didn’t feel well after getting Kybella but that was many years ago before I was diagnosed with lupus. Now my lupus is pretty well controlled. Anyone have well controlled em autoimmune disease and get
Botox? What was your experience?

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?

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.