r/lupus

I have SLE and RA. How do you maintain stress levels, so that you dont flare? Any suggestions will help. THANK YOU. ♥️

tl;dr: my husband made a joke (not joke) about moving to a less hot/sunny place to manage my symptoms and I don't think I can cope if we actually have to. Questions at the end of the post.

So, I live in the California central valley, where it gets so hot and the UV index is pretty high all year. I'm a baby in the heat. Always have been, always will be. This is my first summer since being diagnosed and now I have to be covered head to toe in clothing *cries in heat exhaustion* or smothered in sunscreen that my hella ADHD ass has to try to remember to reapply every hour (give or take because I sweat a lot).

I expressed this to my husband who jokingly said we might need to move "north" (specifically the PNW). As the conversation continued, I realized he wasn't totally joking after I made a joke about Washington being really nice and he said "we'll see" pretty seriously. Almost all our family is in California and most are within two hours of us. It would be so sad to leave and not have the support they provide us and our two kids (my 3 year old always asks if we're going to my in-laws' every time we leave the house to go anywhere).

Sometimes I feel like this is stealing away my quality of life beyond just physically. It sucks that my kids would have to be subjected to the heart break of being separated from the family that they love so much because my body is stupid and hates happiness. I would live my life feeling horrible if we could stay here for the sake of my kids. My husband is understandably worried about it all though.

Has anyone had to relocate for similar reasons? How did you cope, whether you had to or not? Any tips on how to manage this?

She hurt her wrist recently messing with an air conditioner (| live downstairs I don't know why she didnt have me do it) and thought it triggers a major gout flare up in her wrist and thumb; after several weeks of nursing it and tart cherry/ uric acid pills she noticed it wasn't getting better and her wrist has been in throbbing pain without about to use her thumb. She had gone to the hospital to get checked They said it's Systemic Lupus Erythematpsis. They said she probably had it over 10 years now as her indicators were misdiagnosed. The flares where she gets the blisters all over her mouth, gums, and throat is a major indicator, the hives and rashes on her chest and face, and then what made her seek treatment-gout like symptoms, which aren't caused by high uric levels. Her uric acid levels were a little elevated, but still in decent range. No crystal formations. They did an mri of her hand and wrist, and several blood tests.
She tested positive for 28 markets out of 28. He said that because she was in advanced stages of Lupus, she might not regain function of her thumb again.

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https://preview.redd.it/y99o51s8hb2h1.png?width=1672&format=png&auto=webp&s=c6525b09f9365d58e6474182502399cafe6ea113

Donald Thomas, MD

I currently reside in florida near the city My lupus does actually pretty well in the cold but not the freezing. But it can not do the heat and Florida is hot 10/12 months of the year 4 of the months being so brutal can barely keep the blinds open.

Has anyone been prescribed and taking Provigil for lupus related fatigue? Fatigue is one of my primary symptoms at this point and I was prescribed this yesterday but always cautious with new meds. Can anyone let me know their experience with this please?

Just to clarify - I don't mean taking a break from treatment.

Just from the never ending, revolving door of doctors and specialists.

I told my husband today I don't think I want to continue down the Mayo route. I don't want any more interrogations about my diet or exercise practices or stress levels or eating habits. No more needles. No more pee cups. At least not for a week or two - until I can catch my breath. And no more new meds. The last one nearly destroyed my body and wrecked my life. I pretty much lost my job and may get booted from my grad program. How am I supposed to explain I got behind bc I was fighting for my life? How is that an excuse for poor performance when I always seem to be fighting for my life? It's my normal.

I promise I'll take my Plaq and supplements and hrt. I won't eat gluten or sugar. I'll exercise. I'll even take the psych meds they gave me to deal with the havoc the disease wreaked on my world. Just no more poking and prodding and feeling like a have to explain myself for not being healthy. Please. I can't handle another blown vein right now.

Is it wrong to want that? To want to just say no for a short while? Probably so. I just want a break so badly.

That’s all. FML I’m going to be worthless tomorrow I don’t have time for this. Sleep tips appreciated I guess.

at 25, i've dealt with lupus symptoms my entire life. and my family has always labled me as "dramatic." sun sensitivity, heat sensitivity, fatigue, butterfly rash, etc., you name it. to sum up the past 2-3 years of my life, everything has gotten worse and i am debilitated more often than not. i had to quit my job abroad and move back in with my parents. grateful as i am, they still think i am overreacting and being a tad dramatic (depsite the fact my life has irrevocably changed) and they do not care to learn how it impacts me and my life moving forward.

cancer is familiar to my family, and since beginning to break the news of my diagnosis, i am not only hit with "you look fine," but "well it isn't cancer," too. normally, i'd be able to shoo away my family's opinions, but now a close friend of nearly ten years is demonstrating similar behavior. there are few things worse than being dismissed by someone who you care about and whose opinions you value, especially when those opinions are about how they do not believe the gravity of your new life. i've been saying this frequently lately, but i really just feel locked out of my body. being a good friend is hard when you are rationing what little energy you have.

i'm wondering how other's have dealt with dismissial from loved ones, and if campaigning to educate has done anything. whether it's worked or not, i'm grateful for the solidarity in advance.

I love to craft and make things with my hands. A lot of my lupus pain manifests as pain in my hands, wrists, and fingers making crafting very difficult especially when I have to use my hands with precision which is generally required for all crafts 🥲.

But mostly I struggle with: writing for long periods with a pen, knitting, or embroidery. Anything that keeps my hands in one position for a long time. Needlepoint, cross stitch, painting, drawing, are also similar challenges for me. 🥴

I recently tried diamond art (think bedazzling but instead it is creating art prints by placing the diamonds by color to the assigned sections) and I am happy to report back that I found this craft to be lupus hands approved. The diamond tool thing is easy enough to hold different ways that I'm able to make work with my hands, and it requires precision but is also fairly forgiving. And it's really fun! ✨

I'm just recommending this type of craft for people who also love crafting but face similar lupus hand problems because I was desperate to be able to make something and I think I've finally found it!

I feel like I’m going crazy and can’t explain why to anyone. I’ve had a total loss of, self knowledge/confidence isn’t the right word, almost like grounding in reality since my diagnosis. I feel like I was so blindsided by it, thinking i was fine/normal for so long that I lost all trust in myself and my judgement. I need constant reassurance on my work or what clothes to buy or what to eat because subconsciously I feel so scared trusting my opinion. I just feel like i’ve turned into this nervous needy wreck. I’ve looked into building self confidence and assurance, but everything i’ve read talks about learning to trust yourself through consistency and routine so you can prove to yourself you’re reliable. I don’t know how to do that when life is so inconsistent? I can’t build a morning routine or an eating routine when doctors appointments and flares effect everything. And even if i do push myself to do that, how do I manage to give myself grace? I don’t think this makes sense but I just am a mess in all of my friendships and relationships because I can’t evaluate anything. Has anyone dealt with this? How do you build confidence and trust with a body that’s so unpredictable?

I got diagnosed about 1.5 years ago with UCTD.

Have been on HCQ since.

Shortly after getting diagnosed, I started getting very frequent headaches, and these are bad painful episodes sometimes lasting over 2 days.

Has anyone else experienced this ? Could this be HCQ side effect? Is this an indication of some form of disease evolution ?

My rheum does not seem to give any serious heed to this.

I hope I'm allowed to ask this question here due to how specific it is, so apologies in advance if not.

I'm considering moving from FL to somewhere in New England (not sure exactly where) due to unbearable sun/heat and the drs here aren't as knowledgeable about my disease(s) as I'd like.

I've heard the hospitals in New England are better. Has this been your experience? I currently have income-based charity care here, where if I go to the monopoly hospital chain, whatever my insurance doesn't cover is covered by the hospital's charity care. Google says they have something like that in Mass. Has anyone experienced this?

And overall, how has your experience with lupus been living in the New England area? Are the doctors good?

Curious to hear what others in similar situations have done. I have a high-stress career that require frequent international travel, during which I usually get ~4 hours of sleep and am on my feet for many hours a day. I used to love the travel, which is arguably the only positive to my job, but these days, I can barely get through it.

I’m coming off of a trip right now and I’m absolutely terrified it’s going to trigger a flare. My last trip did and it was miserable. Even without a full-on flare, the joint pain and brain fog feel like they basically incapacitate me before I can even get home.

I’m struggling because I’m not willing to do this job without this perk, but I don’t think I can keep doing the travel. Worst part is it’s a horribly toxic work environment and my colleague has pointed out that “it becomes an HR issue” if I stop being able to perform these duties.

Basically, I’m at a loss. I don’t want to give up on a job just as I’m starting to gain seniority and respect, but I also know that I can’t keep doing this forever. Anyone been through similar situations?

I feel like someone asks at least once a month lol but I always like these posts. I have tried ALOT of sunscreens yall, but I have yet to find a like go to facial mist for reapplying over makeup that works good.

I tried the coola mist (the mist is too powerful & greasy); sunbum mist leaves little dots, the elf makeup one is my current one since it's okay but it messes up my makeup ironically. The one/size mist by patrick starr legit is like hairspray and makes me feel like I have asthma LOL. The kopari body spray spf 30 mist is okay but I don't think it's meant for the face :/

Side note can we talk about how Rare beauty hardly has any SPF options? Like I love my girl Selena Gomez but sis .... if you were inspired to make the products easy to open because of your lupus WHY do you not have more SPF EVERYTHING ugh, or is that not weird to anyone?

Any updates or have y'all found any good ones yet?

I’ve been on plaquenil for Lupus for over 20 years.

I just made an eye doctor appointment (they know I’m on Plaquenil - and I’ve been seeing them a few years) and they told me that the visual test I usually do was no longer needed. They told me the other advanced testing they do would catch anything. They do run other tests on me. But, I’m a bit confused. Has anyone else run into this and know what’s going on?

Hello all. I want to tell you lovely people a cautionary tale about why it is so important to trust your body and your intuition - and also BE YOUR OWN BEST ADVOCATE.

Storytime: I've been on prednisone for a long time. I mean a LONG time. Like several years. I know there are people out there who can count the number of years the have been stuck on this stuff in fives or tens, and I credit the stuff with keeping me alive and functioning when it was needed. But this story is about what can happen when you stay on it longer than it is helpful.

My rheums, you see, never took me off of it. One would tell me we needed to try tapering down, but we never actually got to that point. Another was resigned that I would be just fine on 5 or 10 mg for life. (I was not fine). I had no idea that any of this should be raising all of the red flags - especially because as my disease markers got better and better, I FELT WORSE AND WORSE.

In desperation, I went back to my rheum who gave me Imuran and upped my pred dose. I didn't know it at the time, but this is what made things get dangerous, fast.

I got bad...like REALLY bad...like ghostly white and 90lbs at 5'7" bad...this Spring. I was exhausted from just moving the laundry or taking a shower. I couldn't eat. I couldn't exercise. I struggled to catch my breath at times. I couldn't even think clearly sometimes. Then I started bruising everwhere. My skin got paper thin and the littlest pressure caused it to rip and bleed. I had a hard time stopping the bleeding, too.

At one point I thought I might have scurvy, or blood cancer, or MS, or any number of serious, potentially fatal diseases. I kept going to back to the doctor and getting dismissed because my lupus markers were fine. My Blood Count panels, however, were very not okay and getting worse. I felt like no one wanted to deal with me because no one could figure out why I got worse instead of better. But, I kept pushing and insisting that something was wrong.

Eventually my rheum gave in and punted me to the Mayo clinic where I was diagnosed osteoperosis and macrocytic anemia within the first few hours. But wait... My diet is meticulous, I take hrt RELIGIOUSLY as well as ALL the supplements - and all of those nutrient levels (B12, ferretin, Vit D, etc, etc) where all in normal range.

I didn't understand how this could happen. I was SO careful.

Well, it turns out that prednisone forever (or even long term) can significantly reduce your bone density. Imuran can actually suppress your bone marrow. And, the two together, in some people, are a recipe for hematological disaster. The worst part was that, because I was conditioned that the right thing to do was up my dose of predinsone every time I felt sick, I just kept throwing more and more of it at the problem, making it worse and worse.

I am off Imuran now, recieving regular B12 shots (just for good measure), and tapered down to 2.5mg of prednisone. I am supposed to start fossimax soon and hopeful undo the damage I did to myself being over reliant on this toxic stuff. I am grateful for the perserving benwfit it gave me when I really needed it. But please learn from me and do not overuse this stuff.

Finally, please never stop advocating for your health. If I had given in, and continued on with pred and Imuran, I don't know that I would be alive today.

Edit: Hey all. It was brought up that I really should clarify which meds contributed to my crisis in what ways. FYI see below -

Imuran: bone marrow suppression +  macrocytic anemia 

Prednisone: thin skin + fragile veins & vessels + heavy bleeding and bruising + loss of bone density

Together it was a miserable and frightening spiral that I am happy to be recovering from!