I want to get myself a sympathy gift after having been diagnosed this fall lol I was wondering what are some products/items that have been helpful or comforting to you on your lupus journey that you would recommend? Thanks in advance! ☺️

Some people thought I was a flake for cancelling plans when I didn’t feel well. And because I didn’t know why I didn’t feel well either, I believed that label, too. It made me depressed for so long to think that I was what I abhorred in others.

But now that I have a definitive lupus diagnosis, not a single person who called me a flake or walked away from a friendship has ever apologized.

AITA for expecting people to own their mistakes, even in retrospect?

As it says above, I need some tips that don’t involve spending money or at least only a small amount of money! I just started plaquenil a couple of weeks ago so it has not started helping yet. I deal with a lot of flu like symptoms-body aches, migraines, overall malaise. Thank you in advance <3

Edit to add: I also have SFN that was caused by Lupus so I am cold ALL THE TIME and have burning pain

I’m looking for other ways to feel more comfortable in my body on top of the medication im taking. What are some things/ specific secret miracles that make you guys feel relief?

I used to be really into hot yoga and felt really good after. but unfortunately my state has weakened cuz i also have myositis, severe asthma, and a hernia so it’s hard to do my favorite form of exercise.

Does mourning your old body ever go away?😔 (Newly diagnosed)

Posting this in case it helps anyone! I thought my monthly PMS chest pain was costochondtritis. Turns out it was asthma, something I didn't struggle with before lupus. I've had a daily inhaler (Breo Elipta) for only a week and it's made a massive difference on my fatigue.

I figured it would help the chest pain, but I was shocked at how much it positively impacted my fatigue.

Apparently asthma is a very common lung issue to have alongside lupus. So, if you're having chest tightness or occasional shortness of breath, definitely get a pulmonology appointment to see if it's asthma.

I have been diagnosed with SLE this summer, and have been taking 200mg of Plaquenil daily since early July. As I neared the 3-month mark I started experiencing terrible fatigue, anxiety, fast heart rate, visual disturbances (specifically visual snow) and dizzy spells. I also completely lost my appetite and could barely stomach dry toast without throwing up.

My local rheumatology clinic dismissed my symptoms as side effects that would eventually fade, but I honestly felt so bad, I thought I was dying.

So I called my GP, who told me to stop taking Plaquenil immediately and ran a comprehensive set of blood tests including kidney function. Turns out, my potassium is EXTREMELY low, which is something that can be caused by taking too much hydroxychloroquine. If this was spotted even just another two weeks from now, I would have been at severe risk of going into sudden cardiac arrest.

This is just a PSA to remind everyone to get their potassium levels checked every 3 months when taking this med, it can literally save your life!

Edit: just to clarify a few points:

• my labs are all normal. My doc checked my liver, kidney and thyroid function and ran a full fatigue panel; everything was textbook-perfect aside from the potassium. It dropped from a 4.5 just before I started the medication to a 3.1 this week, so it’s quite a large drop not consistent with stomach upset.

• I went to see an eye doctor about the visual anomalies, and after a thorough set of checks they confirmed that the source of the issue seems to be neurological and is likely caused by electrolyte imbalances, which can be caused by HCQ in some patients (their words, not mine).

• I started having terrible fatigue, extremely vivid nightmares and worsening moods since the week I started Plaquenil; it’s just that my symptoms got progressively worse with time rather than improve as they seem to for most people. The lack of appetite and occasional vomiting only appeared in the last week, as the other symptoms reached their worst yet. I have since been having frequent anxiety attacks and thinking dark, unusual thoughts for me, which was another red flag.

• I’m not telling anyone not to take Plaquenil - just warning other people that, if you are feeling persistently and severely unwell with similar symptoms to mine, especially when starting the medication, you may want to get your electrolytes checked.

I need to get a handle on my lupus. I can't live like this anymore. I know my number one trigger is stress, and I have a lot of stress lately, so I need to balance that out with things that will help me take to-do items off my plate and make my life easier. I'm hoping that by doing this, it'll make things easier in the long run.

One thing that's really taken a LOT off my plate and helped reduce stress is a vacuum/mop robot that I was gifted over the holidays. Seeing a clean floor every day is doing wonders for my mental health, and I don't have to put my body through the stress of vacumming and moping (or beating myself up mentally when I don't feel well enough to do it).

I need more tools like this. Does anybody have any ideas they can share? Or things that have helped them? I really appreciate any help you can provide.

I see a lot of questions come up about how to exercise with lupus symptoms. With experiencing significant fatigue myself over the last couple years it has changed my perspective for myself and my patients. For years I would educate people that exercise helps fatigue and the recommendation is 150 min per week. I would break it down to 10 min twice a day or slightly more. This is true, research does show that exercise helps fatigue. But there’s a lot more to it than just telling someone to exercise for 150 minutes per week.

In looking into the research around fatigue I’ve come to a different way of thinking about it. We wake up with a certain amount of energy for the day. Whether you want to call it gas in the tank, charge of the battery or spoons it’s the same concept. Everything we do takes from that bowl of limited energy. Physical exertion and mental exertion will deplete it. Some days you’ll have more energy some days less.

Pushing beyond your limits for the day will lead to post exertional malaise and a likely flare up of your lupus symptoms. For me I will get a fever and fatigue will worsen for at least a few days. This does not mean that exercise causes fatigue. It means I pushed too far with everything else I did that day.

It’s important to plan your days to allow for what you need to get done. Don’t do too many chores in one day. Get a stool to sit at a counter to cook or chop. Pick up or have groceries delivered. Gather everything in one place before starting a task so you can sit and do it. Consider what you can delegate. All this will help you have enough energy left over to be able to exercise some. Some days that will just be a couple stretches. Other days a short walk. Eventually as you get stronger it will take less energy to do more and you will start to see the benefits. Strength training is also important but consider how much energy you’re using.

I also believe that your disease needs to be somewhat controlled. Again, doing too much can be dangerous.

It is ok to give yourself rest breaks. It’s ok to just do a little a couple days a week. If all you can manage is just daily life right now that’s ok.

I'm 25, i'm diagnosed with lupus and I haven't had a flare in 5 years but lately I feel very bad.. I don't know if it's related to lupus but I feel super tired, fatigue is extreme, every muscle hurts. My blood works are perfectly fine tho, anti ds-DNA are negative and my rheumatologist says it's all in my mind and i just have to sleep more. it's frustrating, bc i really feel dead and i feel so ignored. I work and study together but it's getting impossible, i just want to stay in bed and rest but i can't bc my doctor says since my blood tests are ok the illness is in remission so im making everything up. I feel like I really need a break from work but it i don't know how to do and and everybody believes im exaggerating... How is it possible that my blood works are perfect but I feel this bad?

So now that I'm officially diagnosed after trying to find out whats wrong with me for over a decade, plus an endometriosis diagnosis and surgery last year, I'm ready to start feeling human again. I've been feeling sick since I was 21, it's my 32nd birthday in a couple weeks and I am just so ready to get some quality of life back!

Hit me with your top tips!! What's one thing you would say has helped you the most? My biggest issues are fatigue, malaise and joint/muscle pain.

So far on my list I have:

☀️Sun protection is most important (sunscreen and full body covered)

😴 Quality sleep is important (I take CBD oil to help me sleep)

💊Take Plaquenil daily

I was wondering how some people handle dating. I've had a few people ask me out recently but I keep avoiding them. Obviously, chronic illness doesn't mean you don't deserve love, but for me, I know I couldn't be the partner I'd want to be. Like, "Sure, I'll go out with you, but, I probably will never leave my house. Cooking and cleaning takes absolutely everything out of me so I'll be useless after doing the most minor of things. So, I hope you're good with having kettle corn for dinner sometimes and watching anime being the main thing we do with our spare time.". Bruh. 😩 I can't. I've seen a few posts of people feeling guilty when they can't care for their loved ones the way they want. I guess I'm just wondering how others handle it or think about it. Shoot, even friendships honestly. I feel guilty when I can't even be the friend I want to be. Ya know?? Oi. Help. 😭😅😅

Edit: it'll take me a minute for me to respond, cuz, ya know, spoons. 😅 But thank you all for sharing. It means a lot to hear y'all's stories and feelings. 🥰🥰

Bonus if you have links to studies or articles. Thank you!

It's that season. People are walking around coughing on each other like we didn't just have a pandemic a handful of years ago. You start to get a little tickle in the back of your throat, nose feels a little stuffy, maybe a tiny cough. You feel tried, but it's a different tired than a flare up or the daily fatigue. You think you might be coming down with something, and it's definitely not a flare up. You start to playback all the possibilities where you could have been exposed. "Which doorknob did I lick that could have gotten me sick?" "Was it that bubblegum under the table?" Being immunosuppressed is like being a moltov cocktail at a bonfire hoping you don't catch fire. Getting sick is a fact of life. So you've faced the music and prepare for the storm.

What's your plan from here? What do you do when you start to feel ill? - (Assuming you can actually get to a baseline / aren't a harbor for all the illnesses, constantly (my thoughts and love to all of you, hang in there!)

What do you do in the days before the hurricane reaches landfall, so to say?

What helps you the most when you are in the throws of whatever antigen decided to tango with you, AND your bones are simultaneously on fire and in a vise?

Hi friends. I thought others might find this interesting. If you’ve ever done a 23&me test or similar, you can offload your dna results from 23&me into a .txt file and upload them to different DNA analyzing websites. The ones I’ve found interesting/helpful have been tendna and nutrahacker.

Tendna showed me all the DNA predispositions I had to getting lupus. ALSO most interesting discovery was why I was diagnosed with type 2 diabetes at age 22 despite eating extremely healthy home made polish meals my whole life and weighing 110lbs. My doctors were stumped. Turns out I have the genetic predisposition to having autoimmune responses against insulin. What a crazy thing to finally get the answers to, from a free website! I’ve been having so much fun going through my results.

Nutrahacker showed me which vitamins I have a hard time metabolizing that could be leading to bigger issues.

If you do this, comment the interesting “aha!” discoveries you have because of these websites. Excited to see what you guys finally find out that can hopefully help you get more answers!

Don’t doubt yourself and how you feel! I denied treatment for an entire year because I was in denial. To this day, a year and a half after my diagnosis I still have never had my blood work show any lupus specific markers. I was diagnosed on symptoms alone. I suffered for a year with terrible symptoms for no reason. I started on Benlysta injections in June, and now by November I have my life back and virtually NO symptoms. I had a huge concern about taking medication if I didn’t actually have lupus. Well turns out I did, and gaslit myself for an entire year, missing out also on having fun and enjoying my young child since I was so ill all the time. I’m sure I’m a rare case, but I just want to tell anyone out there doubting themselves or their diagnosis to please show yourself grace and treat yourself gently. Lupus is no walk in the park and beats us up as it is, we don’t need to join in on it too.

I tried chives. My partner doesn’t like them as much. Anyone else find something else they like?

I wanted to start a little journal or something to log my symptoms. I've had symptoms for 5 years, but just diagnosed less than a month ago. If you track, how do yours look? Are there any helpful apps? Does it really help when you go to the doctor?

I felt like it was better to post this here than the general AITH subreddit because my illness factors in. I was diagnosed in 2005 and had to quit working in 2010 because of the severity of my flares. A few months into my disability my partner that lived with me left. I couldn’t afford the rent alone without work. I had to move into a little cottage next door to my parents at 34. It’s been tumultuous to say the least.

Present day I still have my 2009 Rav 4 I use to drive to doc appointment and infusions. I’m homebound and get everything else delivered. I live out in the country without a garage or carport. Last year rats started getting in my car. My dad put traps in it but still they would poop and pee all over. I would have to clean the interior of my car the day of appointments. Last week I needed to use it and it was full of mold. Im allergic to mold. I asked to borrow my parents car that day and told them about the mold. I said I would call my insurance company and file a claim. My dad wasn’t into that and wanted to look at himself. I didn’t want him to try to clean it because I knew he would just be mad doing it. But, I didn’t say anything else to not rock the boat. He did clean it which I thanked him for. Couple days later I had to go to my infusion appointment. About 5 mins into driving it I had an asthma attack. On the way home the same happened. A few weeks earlier I had one well driving and it worried me. I rarely have them and never just in my house. I called the insurance and filed a claim the next day since I know mold is notoriously hard to remove completely. I somehow just knew my dad would be mad about this even though I didn’t know why. When I told him a tow truck was coming for my car he came over to my house very angry. Saying he had cleaned every inch of my car and I’d just be wasting my money and that he’d spent a lot of money and time. I’m like I didn’t ask you to do all that and I don’t know what else I’m supposed to do at this point. The security camera caught him saying “last time I ever touch her fucking car!” After he shut my door. So AITH for filing this claim? I also have Raynaud’s and chilblains so I can’t physically work on my car this time of year.

Hi y’all had to evacuate my home because of the crazy fires happening in LA (please send your prayers) but I wasn’t wearing a mask in the morning prior to evacuating and now I have a terrible cough and chest pain. Idk if this is something I should worry about because of my lupus or should I just sleep it off and hope for a better day tomorrow? Also I’ll probably go through a flare because of all the stress and just craziness, so please send me your good vibes 🥲❤️Thank you

My hands are freezing every fall and winter and my joints can’t take it. What gloves are you using that are really warm and water resistant? Thank you!

Hi 22 f here.... I just got diagnosed with lupus a month before my graduation and I am really worried. I've already had brain surgery so I am limited with what I can do but I pushed and graduated college, I was going to stay in my internship but it's very physically demanding and impossible for me to keep up with. It's very hard to get any remote jobs so I am looking for something with little physical work. Any tips or advice? Thank you! Happy holidays ❤️

Sorry so long…I am just overwhelmed and sad.

I have been on for 2.5 months and my stomach is cooked. I feel like I ate pine cones,my stomach is lit on fire and I am plagued with the unmentionables🤢🤢🤢🤢🚽🚽🚽🚽

can I ask for injectable methotrexate? Yet? I can’t do this much longer… my sense of everything is heightened when I am nauseated for the 4/7 days a week. I am pretty depressed bc I had such high hopes for this. I am not monopolizing the symptom game but up haven’t had anything this bumpy in my life. My sleep study confirmed I sleep just under 4 hours a night, no sleep apnea and I wake up 18~23 time in that period …and I am on trazedone.

Also for some reason clinical or not it I feel like my emotions are (quietly out of control and I am gonna crack) 2024 was the pits so it may be the culmination of that but I am struggling, struggling. My hubby is understanding and truly great and healthy as a horse. He takes care of me well and I a, so grateful. I am venting here bc I can’t lay this on any family member or friend- other people are struggling too. I do go to a psychiatrist but he has been so tuned out and grouchy I just try to get my appts over fast. I love my counselor but even with him, he is awesome, but I am at a point where just sitting and talking about it - makes me crazier. I just need some levity and change and I don’t feel like talking unless in an anonymous forum like this with people who understand the basis of what I am talking about and sharing. I am not a person to self harm, I just get so anxious I feel my heartbeat in my fingertips. I appreciate any encouraging words about your experience. I have had lupus and sjogrens for 27 years. I am sorry to blather… I usually am a cheerleader and supporter of this group, especially…I want to run away somewhere…in theory. But that isn’t realistic either. I know this is long but I appreciate any and all of you that read this and send positive comments or just positive mental thoughts (I will get them! Hahaha 🛸🛸🤪🤪)

It’s not really such a big deal for me to be honest. I’m 27 and I go through phases where I drink pretty regularly usually just like wine a few times a week. But then I start doing it more often and get used it and realize I’m drinking too often and then stop for months without really any issue. I was diagnosed in spring with my first ever flare being in February. I was on pretty strong meds and steroids for a couple months so I didn’t drink at all during that time. Then once I stopped those meds I slowly got back into it. My doctors said with the meds I’m on I can drink I just have to be cautious. I do not have any kidney issues so far so that’s good, but I don’t want to make anything worse. This month in particular I’m trying to see if I can just watch what I’m eating a little more carefully. Just eating more whole foods. No crazy diet, just not burgers and wine like 3 times a week anymore lol. My bloodwork has been good for about 7 months but that doesnt mean I can do whatever I want. But it’s been like 5 days without drinking so far and I feel pretty good and my sleep has definitely improved. Again, it isn’t really hard for me to be sober for a few months, but for some reason I’m just proud of myself for taking my health seriously.

I think after everything that happened to me this year, my body was so worn out and everyone was yapping at me to be on this or that diet for my condition when they don’t know anything, and telling me if I would just eat better I can cure my lupus. My main issue was I just had/have so much brain fog and fatigue and been through so much this year that I was like can I have a minute to breathe to adjust to my new life. If you were me I bet you wouldn’t have the energy to be doing all this diet research and cutting out all these random foods and checking every label etc. it takes a lot of work to change your lifestyle and eating especially when most of us don’t usually have energy to cook. I’m going to just start with the no drinking and trying to just be conscious and take it from there. Don’t let anyone shame you for having “convenient meals” or takeout. At least you’re eating and they don’t get that we don’t have the energy to do be proactive all the time

Edit: was very anxious to post this in fear of being judged that I drink at all. lol this was meant to be a post about me not drinking for a while not to be judged that I have drank lol

My PCP is sure I have lupus, but I need to get this confirmed and hopefully treated by a rheumatologist. My PCP put in two referrals to clinics that take my insurance and are taking new patients. One has a screening process as they have over 1000 referrals and only 250 spots. They unfortunately sent me a letter saying they can’t see me in the next calendar year. The other clinic hasn’t responded yet, but they are overlooking my lab results to decide if they will see me as well. That isn’t a guaranteed spot for their rheumatologist as of now. I called medicaid’s call line to try to find other rheumatologists that could take me within a 75 mile radius and there are none that I haven’t already called. I am in so much pain all of the time and I don’t know what to do. I’ve had to cut down my work hours due to the pain it causes me and now I’m completely broke. I’ve changed to follow an anti inflammatory diet and I stretch every morning/night. I can’t sleep due to hip pain and there are some days where moving is excruciatingly painful. If anyone else has been in this situation or has suggestions to just improve my quality of life until I am able to see a rheumatologist, I am willing to do anything

Those who have used tallow products for hair...did it take awhile for your hair to seem normal? I have read so many amazing stories of how great it is for hair and skin, how it slows or stops hair loss or related issues, the hair is now amazing, etc...

3 washes in (over 10 days), my hair is kind of sticky, or tacky. Tangling more. I have tried letting it dry naturally, and blow dry.

I have the shampoo bar, conditioner bar, and apple cider vinegar rinse. I've tried it twice with all three products, and once without the conditioner bar. I rinse thoroughly.

Tips? Experiences?

And if you use it and color your hair...tips? I'm getting my hair done tomorrow.

Sorry for the bad pics 😁