Burning eyes in short bursts?
Reddit » Lupus
by /u/lauren1198
1h ago
Anyone else experience this in one eye for a few seconds? It’s intense enough to be noticeable and then will subside. No tears coming out. I’m using Systane preservative free drops a few times a day but will still experience this symptom. Anyone else? ? submitted by /u/lauren1198 [visit reddit] [comments ..read more
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Cause for alarm?
Reddit » Lupus
by /u/mop420
1h ago
I'm 41 male. Diagnosed with UCTD in December, also referred to the diagnosis as "pre-lupus" Recently I've been having pretty severe muscle pain and stiffness in my neck and shoulders. My urine has been foamy, which is alarming to me because my mom is stage 3 kidney disease. I've woken up the last 2 days extremely fatigued and with a feeling of general malaise. Would I be waisting my time with an ER visit? I don't see my rheumatologist again until Early june. submitted by /u/mop420 [visit reddit] [comments ..read more
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Poor quality care in hospital
Reddit » Lupus
by /u/cman2222222
6h ago
I’m on my fifth day in the hospital (after having been discharged two weeks ago with no plan, deteriorating rapidly, and ending up back here) and I feel I’m getting dismissed repeatedly. They won’t run the appropriate tests, and they keep questioning the diagnosis that my outpatient rheumatologist had given, trying to convince me that it’s ME/CFS despite not having any of the clinical signs pointing to that diagnosis. I basically just keep getting the same CBC and metabolic panel every morning and then they say I’m just “too complex” to figure out. How do you advocate for yourself in these si ..read more
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Move Your Body/Exercise Check-in Thread - March 28, 2024
Reddit » Lupus
by /u/AutoModerator
11h ago
Per popular demand, this is a daily check-in thread for movement and exercise. Inspired by this post. Stretching, movement and exercise are important for people with lupus! Maintaining decent muscle tone and flexibility reduce joint stress. Anyone who wants to add a workout to this comment, message the mods! We love input. ****************************************************************************** Workout suggestions of various levels. Courtesy of the lovely emerald-storm, bobtheorangecat, CandidTurnover. Go for a walk! Yes, walking counts. Stretching and Yoga Yoga with Adriene entire You ..read more
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Going outside seems fun but..
Reddit » Lupus
by /u/fritzbee_2018
11h ago
Hi 23 Male diagnosed with SLE. Currently living in the Philippines, tropical country with extremely hot weather. I just got diagnosed with SLE this January and advised by my doctors to avoid sun exposure. Since I do like going outside, being inside the house made me depressed thinking that I won't ever be free again. Though i got tons of sunscreens/sunblock and protective gears/clothing, i'm still not confident on going outside because I am sweaty AF person. I hate wearing jackets especially when its 34 celsius hot outside.. Any tips how do I overcome these thoughts? Thank you. :) submitted ..read more
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New Issue Every Month or Less
Reddit » Lupus
by /u/Severely_Mistaken
16h ago
24 FTM I've been diagnosed since Dec 2022. With SLE and Secondary Sjogren's. Does it feel like every month it's a new issue that arose from Lupus? This month it's been tendonitis in my left foot that's left me on bed-rest and steroids with a brace. Prior Issues have included but not limited to- (not all at the same time, and yes a saw appropriate medical professionals as needed) Upper Respiratory Infections Ear Infections/Sinus Infections (constant) Stabbing Headaches Micro-seizures Long-Covid Inner Ear Polyps Mouth/Nasal Ulcers And Cyst of the Inner Breast I almost had to have surgery on. An ..read more
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SLE Meds
Reddit » Lupus
by /u/Nerdooodles
16h ago
My lupus was in remission prior to getting Covid and the vaccine (not sure which one of these things triggered it). I ended up having severe allergic like reactions (hives, angiodema of the throat, eyes, and lips). I also had skin involvement classified as neutorphilic urticarial dermatosis. I was treated with the following medications that I failed: plaquenil, prednisone, imuran, cellcept, methotrexate, rinvoq, IVIV, ritux, taclorimus, antihistamines, and xolair. Now, I'm trying saphnelo. I have had 3 infusions so far and haven't noticed much of a difference. A couple things have improved on ..read more
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Is it depression or something near that?
Reddit » Lupus
by /u/JeSuisBONHEUR
20h ago
I have had Lupus for over 8 years now and I was diagnosed 3 years ago. I have been a pretty strong one like all of us here but lately I don’t feel myself anymore. I have lost my appetite (it’s rare I WANT to eat. I only eat out of necessity). I have been feeling more unproductive even when I need to do stuff. I have been crying out of no where. Little things are acting like a breaking point for me. For the first time today I thought to myself repeatedly that I wanna end all the pain now. Once and for all. I have been having sleepless nights for days now. Idk what’s happening. Is it a mental h ..read more
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You're young! Stop complaining
Reddit » Lupus
by /u/Obvious_Quiet8593
20h ago
Hi, all. I'm a 24yo female, diagnosed SLE with family history. Here to rant to some people who might understand what I'm going through. I cannot tell you how frequently I have someone tell me I'm young and I'm just overexaggerating when I talk about my pain from Lupus. I'm to the point where I suffer in silence because folks tend to underestimate the pain I'm in strictly because of my age. I also tried ONE time to tell someone "I'm having a bad Lupus day" and was promptly shut down, being told I'm just using Lupus as an excuse to complain and I'm probably just sore from work. No, I'm not. I f ..read more
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Sharp pleuritic pain only lasting a night?
Reddit » Lupus
by /u/Pen15_is_big
20h ago
I had sudden horrible chest pain last night, like breathing menthol mist into my chest but painful with each inhale. It went away, then came back but is much less severe now. What are the possible causes for this? submitted by /u/Pen15_is_big [visit reddit] [comments ..read more
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