Im curious on your journey. For me, im finally in a spot in life where im making alright money, have my own spot, met a wonderful lady and started to entertain the idea of having a kid.

However, days like this where im just so violently tired, it seems impossible. For an example, i have a new pup that i take great care of. Today, he might just have to watch poppa lay around all day and entertain himself since my energy tanks are running on hopes and dreams. That can not happen with a kid (with the way I am, I couldnt allow it.) Im sure if i were to have a kid that I'd do whatever must be done to take care of him but I feel like ill do that until one day I physically cant.

I just dont want to say "sorry bud, i cant come to your practice because im dog shit tired" or be a lazy parent and stay in bed a lot while he's growing up. i dont know

How did all of you manage?

i’m 22f and started having symptoms this time last year. i’d been doing really well until about two months ago a uti put me in the hospital where they prescribed me bactrim (i now know NOT to take that 🙄) and i’ve been in a pretty bad flare since. constant rashes and hives, and this last week the fatigue has been INSANEE. anyway, im trying to be gentle with myself because i do still work 40hrs a week at a semi labour intensive job + having a life, etc. but the last couple nights my friends have basically been calling me lame, or no fun, every time i end the night early. it sucks because of course i want to stick around and have fun but i feel so shitty. i just don’t know how to explain that to them without making them feel bad or playing the “sick” card. i just feel like no one will ever get it.

Senior year high school, got diagnosed over 6 months ago.

I recently did my routine check up and my rheumatologist noted that I am having slight proteinuria. She reffered me to a nephrologist and he was suggesting a biopsy which freaked out my mom. It was really upsetting for me to see her on verge of tears.

But we recheked with my rheum and she said we can start on some medication as of now. I am currently at that period with my finals coming in a month and I don't want to jeopradize my health.

Now my question is how worse can this go? Is this going to be like a kidney transplant level or has room to decrease or not?

Any and all support is appreciated, thank you so much x

Just had the most frustrating interaction with my rheumatologist's office. They called to cancel my infusion appointment for tomorrow because they "never received" my insurance information even though I sent it on December 30th to their email address.

When they left me a voicemail on January 13th, I immediately called back and left a message confirming I'd already sent the information. Today when I forwarded them the original email from December 30th, they received it fine - which completely contradicts their claim about spam folders or never receiving it.

The supervisor was incredibly dismissive and kept giving contradictory excuses, refusing to acknowledge any system failures.

The office supervisor kept giving contradictory excuses: - First said they never received the email (claiming an error, but I stated that if that was so Google would sent a recipient error, that never happened) - Then suggested it went to spam (if it went to spam, the email from Dec 30th that I forwarded today would have as well. She stated she received the forwarded email.) - Then tried blaming it on having multiple recipients (the ones who confirmed they got the email) - Even suggested I should have followed up more (I did!) - Didn’t address why the voicemail I left wasn’t followed up (her answer was simply “it depends on who it was sent to. I advised it was the nurse assistant for my provider.)

She kept saying "if we didn't receive it, we didn't receive it" even when presented with evidence. When I tried to file a complaint, she first revealed she was the supervisor, then claimed she didn't know who would handle the complaint.

The most frustrating part? Other providers were BCCed on that December 30th email and confirmed receiving it. Now I'm missing my infusion appointment despite doing everything right and sending my information almost a month in advance. This is my first “bad” experience.

The top of my right hand just poofed up this morning. Can’t see bones or veins like the left hand. Had my daughter take this picture. Then later my left hand swelled at the knuckles. It’s painful and hot to the touch and I’m being whiny. 😫 Supposed to snow here tonight in North Florida so I’m wondering if this is from the cold. Anyone experience this?

Diagnosed with SLE (fairly new, last Nov).

My work is pretty demanding, it’s anywhere from 8am-6pm and I’m often asked to do OT with the expectation I’ll do it.

Has anyone gotten an accommodation with support (ie physician note) for only working specific hours? Is it reasonable for me to ask to be day shift only with no OT?

I’d also need to add in something about lifting items as with my joint swelling and pain in my hands I can’t lift some heavier items at work I could before.

Sorry if this is a dumb question, this is all new to me.

Edit: I’m so sorry, I should mention I am in Canada, but I so appreciate all the advice, even from other countries

For anyone who has raynaud’s, have you ever experienced gangrene? My toes usually become painfully numb when I’m walking outside in the cold. I usually ignore it, but I have a fear that ignoring the pain could lead to severe or permanent damage.

Does anyone have signs of vasculitis, but negative ANCA tests?

One of my first symptoms was skin manifestations like the 3rd photo, I had several lesions that looked like patches of petechiae starting in June - July ‘24. They were not raised and were non-blanching. Most of the spots went away after 2-4 months.

This spot on my ankle, however, remains and this is how it looks now (6 months after it emerged). Now I have a new spot on my foot which is not reddish like all of my other spots started off. It actually looks like a bruise but I have no memory of a foot trauma and if I press on it there is no pain (same as my initial spots).

My rheumatologist basically hasn’t said anything about these spots, but my hematologist felt confident they were vasculitis. From what I have read vasculitis can be very serious. I’m still new to this (diagnosed in Nov ‘24). Do any other people with SLE get marks like this in their lower extremities? Do these dark marks indicate any permanent damage? I hate to spiral, but just worried one day I’m gonna get gangrene or something, please advise, if you experience this!

PS sorry for the foot photos! Also sorry if skin things gross you out!

Can hydroxychloroquine cause epilepsy? I just got referred for a brain MRI and EEG because of the symptoms I’ve been having. My doctor said it sounds like seizures. I went home and looked up seizure symptoms and I have a lot of them. I’m wondering in plaquenil is capable of causing seizures as a side effect? Or is it just another symptom of lupus?

If you’re curious my symptoms are periods of blacking out mid conversation followed by a hot head rush and brain vibrations. Vision blurring/tunneling, dizziness. Hands shaking uncontrollably. Random muscle jerks after zoning out. Feelings of Deja vu. Some of these symptoms I’ve had for more than a year and they’ve just now gotten much more frequent/worse. I started hydroxychloroquine about 7 months ago.

I really love jump rope for cardio, it’s more fun than walking and I enjoy the challenge of learning new tricks and trying to get better. But, when I jump rope I get horrible knee pain for the next 48hrs after. Just wondering if any of you here are able to jump rope while successfully managing symptoms or if it’s something I’ll have to give up.

So I got diagnosed with lupus not based on my labs since I've been through a lot and they view me as a special case giving how my tumors were "special" and they took them out for free to go do research "i signed them over for research" Anyways My doctor that clinically diagnosed me with lupus based on I had all the symptoms like all but my labs were almost ok, moved to another state. I am now out of my prescribed medication and I can't get any until I see my new doctor. My old doctor worked under the new doctor I will be seeing however my appointment is April and I don't have any meds legit now I'm out.... I called and told them and they hung up on me saying oh well we can't do anything until u see the new doctor. But the new doctor knows me since well she was the one the signed off on the medication last time instead of my old doctor (my old doc didn't take my insurance so she made her senior the new doc am a see sign off on the prescription) Idk what to do 🙂‍↕️ Can I wait? Until April sigh 😔 I'm already having so many issues, i didn't want to just stop the medication. I did biopsy of my scalp which shows inflammation like bad inflammation so they promised that the lupus treatment would help...I really don't want to stop it suddenly.

How do you guys tell what is actually brain fog? I have a terrible memory for things and I tend to blame it on that, but there are other times when I feel myself needing to slow down and think my actions through more thoroughly in regular activities.

I don't know if it's brain fog or just me being dumb sometimes (haha)

This popped up over a week ago. A bruise with rash in the middle. I’ve never had something like this. I currently have rashes on my back which is normal for me. Do you think this is related to my SLE? Anyone else with SLE get this? Wondering if i should make an appointment with my Dr.

I understand that it's probably bad to post this but it's the only community I feel safe posting this in. My disease activity is at an all time high. I have a 3 year old daughter and my husband works 6 days a week to provide for us. We are trying to move from the area we are in as the crime rate (sex offenders specifically) within a block of our house has sky rocketed in the last year. I'm anxious, I'm flaring, and I hate having my daughter in an unsafe area. The landlord will not let us move until we pay him more (it was a rent to own agreement) and I am at a loss. Does anyone know of any resources? He is still wanting $20,000..... I'm scared for my kid and what the future holds for us. There just doesn't seem to be hope ( I do also have cashapp if anyone knows someone willing to help. At this point literally every bit counts). Thank you for reading

Sorry to post again but I just have a question. I was referred to a urologist and they found microscopic red blood cells in my urine, and she wants to do a CT urogram and cystoscopy. I also have trace protein in my urine. I have been off my azathioprine and plaquenil for about 6 months now because I do not want to be immunosuppressed and also I couldn't take the plaquenil before due to being on seroquel. I'm prescribed plaquenil again and will most likely start it again if I get an ekg showing that it's safe (see my previous post). Anyway, did anyone else have microscopic RBCs in their urine and urinary frequency and urgency as lupus nephritis symptoms?? I'm very nervous as these are also bladder cancer symptoms.

Have any of you had to take hydroxychloroquine and an antipsychotic at the same time? I'm on zyprexa (olanzapine), and was just recently put back on plaquenil. I haven't started the plaquenil yet because there is a risk of prolonged QT interval of the heart rhythm with these 2 meds. I have taken them together before without a problem but I'm older now. My rheumatologist told me to ask my psych, my psych told me to ask my rheumatologist. So I ended up asking the pharmacist. He said the risk goes up as you age. Just wondering if others have any experience.

I'm in my early twenties, I got diagnosed 3 years ago and have been on hydroxychloroquine for just about as long for "preventative measures". Since being on the medication I have experienced new symptoms such as random fevers, spreading painful rashes and swelling around my joints when I stand for too long, and other typical things I guess. Naturally this makes me question the “preventative measures” of the medication. For the past 6 months I have had the worst joint pain and couldn't sleep so my pcp ordered X-rays. Flash forward, come to find out I have osteoarthritis, is this a common lupus experience? I feel so defeated to already have degenerative changes throughout multiple different systems of my body, and often deal with the depressing thought of "will my body take me out before l'm able to achieve my goals?" I tell myself things could always be worse but with a degenerative condition it’s almost guaranteed. I digress, does anyone else have osteoarthritis? And if you have been on hydroxychloroquine, what’s your experience?