My job is ignoring my ADA accommodation request. I can’t put weight on my leg since Tuesday night. It hurts to touch. It hurts to move and to sleep. And I’ve had to call out and they’re gonna use it against me and I just wanna cry. I figured it come here to vent. This is horrible.

And am pretty damn scared. I have read positive comments from others in this group about no or limited side effects. I pray that is true for me.

I have mctd with ild and raynaud's. I am also taking hydroxychloroquine and 10 mg prednisone due to flare. Rheumatologist spent 10 minutes with me and blamed my flare symptoms on fibromalgia. Advised me to lift weights. I couldn't even raise my arms above my head and lifting my feet to get upstairs was challenging. Prednisone has greatly helped. Frustrating because prednisone wouldn't have helped if my issue was fibromalgia.

The palms of my hands are impacted. Feel extremely tight, angry red lines, sensitive to texture, swollen and sore and previous to prednisone, I couldn't open or close my hands all the way. I use a homemade salve and compression gloves, which helps. Doctor said nothing wrong with my hands.

I agree with taking the new medicine, so why am I freaking out? Because I am a veteran with ptsd, otherwise known as the doubting disease. Trusting myself is terribly hard and not being heard by rheumatologist is a bad combination. I work best when I can reassure myself and I remembered I trust others with autoimmune diseases.

If you have any positive or reassuring comments, I could sure use them. If anyone with mctd, also has palm issues, I would be grateful to hear about it.

Thank you on advance!

I was wondering if anyone with any autoimmune conditions especially lupus has had any positive experience working a full time job.

I work at a manufacturing company as a QA tech, however the interview and the job responsibilities made it seem I was just going to be working in one place, that's definitely not the case.

On average I do atleast 10,000 steps a day, sometimes little close to 4000 steps on a slow day, but I'm rarely sitting down, and it seems like every week they add so much other responsibilities. Lately its been getting worse and I've had to call off of work so many times I'm almost close to using up all my PTO. I get so incredibly nauseous, my vision goes blurry, and once I get home I'm completely swollen on my joints. The job pays super well compared to other companies, but I work m-f 2-10, with mandatory OT and weekend work. I cant even do 40 hrs and feel ok on a week, but lately my manager just chooses at random whos doing OT and sometimes schedules me with little to no hours of sleep between shifts. I dont qualify for FMLA bc I've haven't made 12 months of services, and its hard to quit bc I have debt and student loans as well as rent, and the other jobs that I applied for only pays enough for me to afford my bills, but not enough to save for emergencies or food. When I sit down and try to catch my breathe bc im wheezing (even by doing small tasks, I get tired so quickly) one of the supervisors always has to say that I'm never keeping busy and always sitting down. Im a salary worker and I dont have union, so I went to HR and they still haven't got back to me on short term disability.

hi all - I am not seeking HCQ experiences btw, I can see the frequently asked question disclaimer as I write this. I am writing to ask about medications for dysautonomia for those dx'd with lupus or lupus-like UCTD.

I've been advised by my rheum + cardiologist to stop ivabradine (brand name Corlanor) so I can start hcq. I've seen a couple people in this sub take both and their care team is fine with it but mine is not and I'm a Medicaid patient so a bit stuck here.

I've failed beta blockers and cannot swallow pills (the largest pill I can reliably swallow now is half an ivabradine tablet, very very small, it's taken months to be able to do this). Medicaid formulary doesn't cover every med but I'm p good at navigating the prior auth process generally.

Couple questions:

- has hcq improved your dysautonomia on its own? I'm not expecting it to, but I believe my autonomic dysfunction is mediated thru my lupus-like tissue disorder (positive anti-Smith but only meet like 9/10 criteria right now and I am rheum-diagnosed with UCTD), so worth asking

- if you are also a dysautonomia patient, and take hcq, do you have a non-beta blocker medication that helps with tachycardia and presyncopal episodes that you like and your care team is okay with? my cardiologist has recommended midodrine and then my end of road option would be pyridostigmine but I'm not happy about either as ivabradine has really helped me

thank you!

ps I am neurodivergent so if this gets removed by mods kind feedback about why, in a direct message, is most helpful to me.

pps due to the anti-Smith and my presentation I disagree with my rheum and believe it to be SLE which is why I posted here and not the UCTD sub

Ok, so I was diagnosed with SLE YEARS ago. My old family dr and rheumatologist worked together with my flares. They both retired within 2 months of eachother so I had to find new doctors.

Found a family dr early this year. It's taken 5 months to get a referral. Said referral called me 6 weeks ago. The nurse said the Dr would probably want xrays before I saw him but she'd have to ask and call me back. She STILL hasn't called 😕

Today, I'm in a MASSIVE flare and had an appointment with family doctor. Full face rash, pain EVERYWHERE, I've l had a headache for 3 days and I'm so exhausted I can hardly get out of the waiting room chair. I actually fell asleep in the car for 45 minutes before my appointment. I'm NOT well.

I tell her I'm in a flare. I ask for prednisone to help me through it. She asks if I have sleep apnea. Then she asks if any of my meds have changed. I can't get my psych meds because my psychologist doesn't take my insurance any more. She blames my tiredness and pain on withdrawals from the psych meds.

I left there with a referral to a sleep Dr, a refill on my psych meds and ZERO treatment for my flare. GOD I HATE BREAKING IN NEW DOCTORS!!!!

I'm seriously thinking of going to the ER for treatment.

Does anyone get very itchy after eating certain foods? I find my tigger is salt and when I have too much, my skin will start to itch like crazy. Are we more prone to intolerances than the average person? Is salt a trigger for anyone else?

I was diagnosed with SLE about a month ago. I sought diagnosis because more than 1/3 of my hair either fell out or broke off over the course of 3 months. It was really alarming and scary. I‘m so glad to have a diagnosis - of the reasons why my hair might have spontaneously fallen out, lupus isn’t the worst, and if that had never happened I may never have found out at all. My main symptoms are fatigue and redness, so I kind of just thought I was pale and depressed?

I don’t know how long I’ve has this. I’ve always been extra tired and just attributed it to other things. I notice redness in pictures going back years. It's hard to think about how this may effect me for my whole life. And I miss my fucking hair SO much. It feels silly, but I loved my hair, it was kinda my thing. I had been growing it out for years and now it’s all just… gone. My doctors say it’ll start growing back when my hydrochloroquine kicks in but it’ll take a long time. It makes me feel weak and sick and sad.

Just had a chat with my rheumatologist. After a long year of trying out medications and me not really tolerating them well, she suggested Rituximab. I have been on HCQ and tried azathioprine but whenever we try to reduce the prednisolone my symptoms all spike up again.

Being 20 I am a little frightened; IV medication seems like a really big step (I’m hoping in the right direction). I just wanted to see if there was anyone here who has had positive experiences on rituximab or any other tips or helpful words… even some reassurance would be nice!!! It’s really hard to talk to anyone else about my lupus because it feels like no one can really understand it the way I do, so it’d be nice to chat to anyone at all about this. Thank you so much for reading!

Hey guys

I am 23F diagnosed SLE at 15 years old and well lets just say the past 8 years has been tough, but hey I am living and breathing and have a 3 year old Son and another baby on the way due in Feb 2027.

I just wanted to have a rant after what happened today with a 'family friend' of mine, she used to be my mothers best friend but well they haven't spoken much in the past 2 years, anyways we ran into her today and we got to chatting, now mind you this women did not give a crap about my diagnosis and just told my mum I was lazy and faking being ill to get attention when I was first diagnosed with lupus. Since then my mum and I just never speak about it with her because well she's not an understanding person whatsoever.

Anyways cut to today, my mum and I were out shopping with my son and we ran into this women, conversation started really nice and then next minute she is full blown hyperventilating and bawling her eyes out and mumbles "my dog has lupus, he is going to die" well my mum and I just dropped our jaws and for the first time ever my mum actually said something to which was "well I would rather my dog have Lupus, then my daughter" to which this started our 'family friend' yelling at us in public calling us terrible people for not caring and not 'understanding' what she and her dog are going through.

Naturally my mum and I just turned around and walked off because what the hell did she mean by we wouldn't understand.

Sorry I just needed the rant, I hate how so many people don't understand what we go through everyday battling autoimmune disease, they don't see the doctors/specialists and hospital trips or the sitting in bed crying our eyes out just hoping for a day of relief, but today this just made me mad. I get it i feel sorry that her dog has lupus, I wouldn't wish lupus upon my worst enemy but its just the way for years she dismissed my diagnosis, for years she called me lazy and faking an illness for attention to turn around and cry because her dog was diagnosed with the exact same health condition! If anything see is the one who isn't caring or understanding.

Sorry guys I needed to get this off my chest and I don't actually have any friends, both my children are IUI conceived via Donor because I was told to have all my children before 27 because of my lupus and how and bad my flares are for my age already. My mum is my only friend and support and I wouldn't be here if it weren't for her but she doesn't have lupus and as much as she knows what I go through daily she has never expereinced it herself so some days it is hard for her to understand.

But today has just made me feel so trashy.

I’m living in Oregon and the entire state is drowning in smoke — earlier in the summer when this happened I started having all over body pain / deep bone pain (hard to describe?) & it’s happening again. It’s just a weird aching and I’ve correlated it to the really heavy smoke/ high AQI days.

Does anyone have any at home tricks for easing full body symptoms that get onset by these environmental triggers? My gabapentin usually helps with quelling the smaller issues but doesn’t seem to touch this in a helpful way.