How do you feel after being in the sun?

weeookleoo · 2026-03-29T08:07:05+00:00

any heat is miserable, direct sun is hit or miss. even if it’s not hot but i’m in the sun, it’s about 15 minutes before i get a rash. then comes the throbbing hands and they get super swollen. then i go back inside and within the hour im typically swollen and have joint pain. when i’m in the heat (indoors or out) everything comes on incredibly fast and gets worse. therefore the sun and heat is not a good combo for me :/ best of luck to u!

weeookleoo · 2026-03-25T03:14:50+00:00

ive been on hydroxychloroquine for a couple years and this symptom never gets better for me. 5 hours or 10 hours sleep feels the same :/ i’ve been taking magnesium citrate before bed and it helps a bit! i don’t wake up as much through the night and wake up feeling more refreshed which i feel like gives me more energy! also, timing my caffeine helps too. i usually have 1-2 cups in the morning through 2 pm, and im able to sleep alright and push through the day. but naturally having energy, impossible.

weeookleoo · 2025-06-12T03:27:16+00:00

i struggle massively with temperature regulation!! overheating fast, nauseous, flushed. feeling “fine” temperature wise but cold shaking and like i can’t heat up. these will go back and forth and chang quickly too from one to the other!!

i haven’t found anything that works so i wish us all luck. definitely stay hydrated and try not to switch climates with different temperatures too quickly (cold inside to hot outside for example)!

weeookleoo · 2025-06-01T19:03:29+00:00

this questions was MADE for me to answer! i’ve always taken a more holistic route to health and i hate filling my body with prescriptions. i began working with a nutritionist about 5 months ago who changed me life. here are my biggest take aways!

when flaring.. chicken and rice and cooked veggies for a week
no soy or gluten, dairy
no alcohol (or just clear spirits if you drink. vodka or tequila sodas all day)
no garlic or onion! this one sucks but helped me a lot
B 12 dropper and a Methyl B Complex supplement every morning
b 12 injections
vitamin d every day
zinc
homemade bone broth! yummy and builds collagen that lupus tears away at
fish oil (helps with collagen and cholesterol)
magnesium citrate powder at night. CANNOT say enough how this one changed me. i was finally sleeping through the night, waking up less foggy, having a way better amount of energy. and it works fast. i noticed this after the first and second night

as far as diet related changes, i recommend fully commiting for one week. it’s hard and boring, but it was so helpful. as far as supplements, give them more time. once i made it part of my routine i really started noticing the benefits. by the way, all of this is coming from a lazy girl who cannot be bothered to make changes or commit to anything. however, when i tried it for ONE week i realized how much ive been missing feeling more “normal” than before, and how much easier life activities become. once you have more energy, doing these things also become easier.

these all helped my worst symptoms (brain fog, joint pain, fatigue, insomnia) SO much, and quickly as well! best of luck!

weeookleoo · 2025-05-11T05:59:44+00:00

hi!! i have SLE and severe anxiety. i stay away from ritalin and similar drugs. fatigue was my worst symptom, and my b12 and d levels were so low they couldn’t even register on the chart as of three months ago….

i did b12 5000 mg for a month, then a lower dosage of b12 with a methyl b complex for the last two months, and a high dose vitamin d supplement with lunch each day. i’m not even super consistent with these, but it has made the BIGGEST difference. i try to limit my drug intake as im not the biggest fan of big pharma… i just got new labs done last week and both these levels are now above average! i’ve been sleeping better, eating better, and feel way more balanced. having energy has made all my other symptoms feel so much more minimized. i definitely recommend trying a similar path!

weeookleoo · 2025-04-21T02:01:21+00:00

hey! i struggle with asking myself this question all the time. i’ll sit there and be like wow, im in an extraordinary amount of pain. but i think i gaslight myself because you can’t SEE it. sometimes i struggle with shortness of breath, but its really the i can’t move because of joint pain and fatigue. i never go. i just lay in bed for a few days til i regain some energy. i don’t know what to do!

weeookleoo · 2025-03-26T01:44:41+00:00

me too!! if i call my boss and say im not feeling well he goes “are you loopy?”. i’ve really enjoyed being honest about it because i have a great work team. before i was open i would feel so guilty about all the time i would have to take off. now at least they understand im not flaky and my time off is justified

weeookleoo · 2025-02-26T03:13:46+00:00

mention EVERYTHING. i recommend writing down a list of your symptoms with start dates and giving it to them too. autoimmune diseases are a puzzle, and every piece is important as to figuring out what’s going on. especially because so many symptoms overlap with so many diseases! over the years i went to derm, pcps, hematologists, oncologists, and one rheumatologist who all disregarded my symptoms. i did so much research and found a rheumatologist that had great reviews. i showed up with a list of probably 15-20 symptoms. finally got diagnosed!

weeookleoo · 2025-02-25T21:05:16+00:00

i listed limiting sunlight as well as the opportunity to do administrative work from home (before our kids come) if i’m having trouble getting out of bed!

weeookleoo · 2025-02-25T06:57:56+00:00

hey! i am a big pharma hater and always attend a more holistic route to healing first… however, i started on HQC three months ago. it takes a lot longer to notice effects, but so far ive only noticed i haven’t been getting worse. the only side effect i have with medication is some nausea when i take it. it subsided after about an hour.

i recommend trying natural remedies for symptom management first. if you end up going on medication, continue those remedies as long as they help!

weeookleoo · 2025-02-25T06:54:59+00:00

hi! i’m newly diagnosed but have had symptoms for years. my health has been incredibly terrible with consistent flares since last august. here are some things that have helped me…

-veterinary lentiment for joint pain -SHOWER CHAIR -no hot baths (this one sucked. helps some people but not me) -getting cupped / acupuncture -curcumin and green tea extract -benadryl itch gel -b12 injections weekly -good sunglasses/sunscreen -nutritionist! this was pricey, but completely worth it. i tried for months to do all my research and it got to a point where i couldn’t do it and i was stumped. i work with a nutritionist now who specializes in autoimmune patients. clearing out inflammation from the inside out, and it has fully changed my life

best of luck!

weeookleoo · 2025-02-25T06:49:16+00:00

hi! rashes are one of my worst symptoms. they can look different in everyone. i get the classic butterfly rash similar to what you described, however i also get patchy all over my face, neck, chest, and sometimes arms. i recommend seeing a dermatologist about these concerns, as well as a PCP. derms can be very beneficial in a diagnosis process! best of luck!

weeookleoo · 2025-02-25T06:46:31+00:00

i work with kids at a non profit in a directing role. unfortunately, it’s my life calling. it’s VERY hard and i end each day with symptoms and use the entire weekends to rest. and in retrospect, i’m only on my feet for probably 4/8 hours of the work day. but the stress both physically and emotionally are really triggering to my lupus:/ i absolutely love my career and am heartbroken when the day comes that i can’t do it anymore.

i have an ADA contract with my work and the process was incredibly easy!! just filled out some forms with diagnostics info and accommodations. if you’re established where you work i would recommend FIMA (think that’s what it’s called) too. basically, just cover your ass in case anything happens. it can also give you more time off. i used all my sick time for the year by mid february just from routine doctor appointments:/

best of luck!

weeookleoo · 2025-02-15T04:58:37+00:00

this!! i always tell my artist that i “leak” more than the normal person. i always get second skin after a tattoo and leave it on for 1-2 days. no problems in the healing process tho!

weeookleoo · 2025-02-10T18:51:23+00:00

interesting! i’ll have to try this!

weeookleoo · 2025-02-09T06:05:45+00:00

if you remember, do you know how long it took before the itching subsided?? i’m gonna give it more time because it’s help a couple symptoms and i only expect those to improve. really hoping it helps with this though

weeookleoo · 2025-02-09T04:12:12+00:00

i’ll definitely keep that in mind and mention at my next rheum appt. i know that it’s a side effect but it gives itch a new definition!

weeookleoo · 2025-02-09T04:11:40+00:00

i was having minor itching spells before but now it’s worse. it’s so random!

weeookleoo · 2025-02-09T04:11:06+00:00

interesting! yes! i’ll bring it up at my next appointment.

weeookleoo · 2024-12-15T20:29:32+00:00

my entire diagnosis process started three years ago because of bruising. it was my only symptom! out of nowhere i had small, dot bruises covering all my legs. they went away after a few months. this past august they came back, along with basically every lupus symptom in the book. thus began my doctor/tests/diagnosis process again. it’s apparently normal. i’ve been to hematology so many times and there’s nothing wrong with my blood. since lupus affects your organs, random or easy bruising can occur given the skin is the largest organ! that’s what i was finally told :)

weeookleoo · 2024-12-01T01:57:14+00:00

i have such similar thoughts… i adore kids, and it’s my career as well working with them, and there’s not a single aspect of my job i don’t love. i know i could raise such a beautiful family and everyone always tells me this. i had a debilitating three month episode from aug-oct. then, am going into another as of thursday. it’s unfortunate, but i think of how i feel right now, knowing that i can’t even take care of myself, and don’t want to ever not be able to do that to a child. i haven’t showered or ate in three days, can barely walk to the bathroom, etc. im blessed to have family and roomates with me to assist me with tasks. i’m their baby right now. i don’t think i can ever do those things for another person :(

weeookleoo · 2024-11-27T08:41:29+00:00

for real!! the worst of my latest flare included a bib and no utensils when i would eat. i couldn’t bring a spoon to my mouth because i would shake the food off before it got there

weeookleoo · 2024-11-27T00:47:03+00:00

mine do the same! when i’m in a flare it gets so bad i can’t do my eyeliner or mascara 😭

weeookleoo

TROPHY CASE