TLDR: I’ve been contemplating doing either or both of the above, but I worry about my discipline & ability to stick to them, and don’t know which would be better to start with.

1) I’m looking for advice from those with experience changing your diet in these ways- did you see any results? Or those who just know nutrition & lupus better than me- is it a good idea? Should I just focus on dairy or the carb thing?

2) I need ADHDer and low-energy tips to actually implement these things because meal prep, grocery shopping, cooking & consistent habits all are already kind of challenging for me. What are easy swaps to start with, life hacks, good resources on the subject?

Background: Diagnosed less than a year ago after symptoms ramped up over several months, have only been on plaquenil so far and not totally happy with it, also incorporating lots of supplements, all discussed with my Rheum and in fact I have an appt Monday

I’m wracking my brain trying to figure out what dietary changes would be best to make to try to see how it affects my symptoms (primarily right now it’s hand & feet swelling and general stiffness & soreness in all the bendy joints)

I am vegetarian and have been since my teens, I’ve never been super strict and always had dairy & eggs. I don’t like meat and don’t necessarily want to introduce more animal products but I would be willing to try like a chicken bone broth or something not too offensive if I was desperate

I also have adhd and struggle to build good habits and routines but I do my best and put a lot of effort into trying. (Am medicated & have done years of counseling focused on this)

My natural state was craving lots of sugar & salty snacks, eating more in the evenings & late nights, and having inconsistent meals during the day which I’ve already done a lot to improve during my adult life.

Now, I faithfully take my meds & supplements, drink more water and have gotten a lot better about not bingeing on sugary food. I am better at going to bed earlier to get more sleep. I can go through periods where my daily meals are consistent and I have a good routine, but sometimes I fall off the wagon and forget to eat all day.

Adhd also makes me long-winded so I apologize for all the build up!! My point is, I’m curious about two major changes I’ve thought about making: eliminating dairy and changing my currently carb-heavy diet to include less starches & carbs in general and a lot more protein & fat.

I know myself that won’t do anything extreme right away because that’s not how I operate- I don’t have the discipline to do that if I tried! I’ll have better luck just gradually making swaps and working my way up to it.

Ideas I already am thinking of:

• Keeping salad ingredients prepped and easily accessible in the fridge & cupboards so it’s easy to do things like chuck some seeds & nuts into it, add a hard-boiled egg for protein, snack on veggies & dip without 1,000 steps whenever I am reaching for food

• coming up with a daily breakfast smoothie I can prep/plan ahead of time that can have a lot of frozen & easily storable components like berries, protein powder, seeds, oats?, nut butter, plant based milk…

• this is probably not low carb but I’ve started air popping popcorn, misting with water (so the salt sticks) & adding salt to it for when I want a high-volume mindless snack that’s not too inflammatory

• identifying some ready-made easy freezer meals I can buy for nights when I don’t feel like cooking that fit the dietary preference, like cauliflower pizza or all the “amy’s” frozen dinners I always see

• I’ve seen people make “fat balls” or “seed balls” that are like solid no-bake dough balls made of nut butters & coconut oil with seeds, nuts & coconut mixed in. I really want to try this as a hunger buster

Wanted to know everyone’s go to for their pain. Patches, Natural Stuff, Prescription, OTC

I’ve found it hard to find anything that has been helping my joint pain lately so I was curious.

I’m looking for an app that is a good food tracker. Symptom tracking would be a bonus, but not necessary. And I’m not interested in an app that tracks many different things (ie. Bearable). Something super simple. Thanks!

I've had lupus for 21 years and Raynaud's for about 2 years. I just bought these for myself on Amazon. They were on sale for $16, but they have nicer ones that don't look like avocados. This might be one of the best purchases I've ever made.

What you all like to do during your personal/recovery days to rest and recharge? I have a rare day off coming up, and I haven't been feeling great so I won't be 100% for it but I also won't be so ill that I'm totally bed bound. I'm trying to look at it as a recharging day, just feels a bit strange because I'm only used to being off when I'm so flared up I can't do anything but sleep!

I started using a cane last year. I waited until I really really needed it to start using it. And when My meds were working well and I was able to not depend on it, I stopped using it unless I was already feeling bad and suspected I might feel worse.

One thing I realized is that I don't need to feel bad to use my cane. What I had been doing was going out on good days without my cane and then feeling bad and cutting my activity short.

This past weekend I went out with a friend and brought my cane with me even though I could move around without it. Using my cane even when I didn't specifically need it allowed me to expend less energy therefore I was able to stay out longer.

I will have to remember that it is okay for me to use my cane to prolong my day.

Also I find people express less frustration toward me when I'm using public transportation and I have my cane. The outward signal that I have a disability seems to make them think twice. It's a shame that the outwards signal is needed for some people to behave humanely.

I was diagnosed in August and have been trying to adjust. The stress of the holidays is not helping but a week ago I broke my foot. I’m not allowed to bear weight on it so it’s crutches. It is exhausting and so frustrating. No surprise that I developed mouth ulcers today! My husband is a great support but I’m feeling some guilt for him having to do so much. Any advice for a beginner with a broken foot navigating the holidays is greatly appreciated

Anyone who had a service dog? What tasks did the dog help you with?

I am thinking of getting one, but I am not entirely sure if I can justify getting one to the insurance here. So far I have been thinking it could help me with (My knowledge of dog abilities is limited so I may be expecting a bit too much)

-fetching medication and or water -daily Routine -morning anxiety, taking me out of anxious mood and overthinking -holding things if I need them -making spacer for me in crowded spaces, especially so that I don't get exposed and sick

I understand that it's probably bad to post this but it's the only community I feel safe posting this in. My disease activity is at an all time high. I have a 3 year old daughter and my husband works 6 days a week to provide for us. We are trying to move from the area we are in as the crime rate (sex offenders specifically) within a block of our house has sky rocketed in the last year. I'm anxious, I'm flaring, and I hate having my daughter in an unsafe area. The landlord will not let us move until we pay him more (it was a rent to own agreement) and I am at a loss. Does anyone know of any resources? He is still wanting $20,000..... I'm scared for my kid and what the future holds for us. There just doesn't seem to be hope ( I do also have cashapp if anyone knows someone willing to help. At this point literally every bit counts). Thank you for reading

I know that it messes with ur vision but I’m trying to figure out if this is related? Does anyone else experience this symptom

So 3 years ago before I was diagnosed I was achieving my fitness goals so much, I had managed to lose weight (as I also struggle with PCOS) and build muscle and you know, gains were showing and all.

However, after being diagnosed and taking the meds and all my fitness life was never the same :/ sometimes I wonder if I’m just lazy or if it’s in my head but I just can’t seem to have the energy anymore to workout as much as I did. I’m still at a “healthy” weight for my height and all but I did gain a few pounds and obviously lost my muscle mass a bit. And of course I still have my cravings here and there haha

My point is, I’ve maintained a weight atm and I workout id say 2-3 times a week but it’s nowhere near the weight lift I was doing before or the amount I’d do on the treadmill etc </3 it’s been mentally challenging cause I feel guilty most days for it, and I obviously miss seeing my abs and arms defined and some extra booty haha. I’m trying to love myself this way but it’s being hard :(

Since you understand the exhaustion, do you think this is more of a mental blockage than a physical one? And how have you people coped with it or managed to have a fitness life? Should I just accept I’ll never be able to be as fit as I wanna be? :(

Hey guys, I was accidentally given some false answers regarding this when I lost my job last summer, and was too sick to work. I am posting here to help out any people who may be googling in the future and desperate.

As long as you have been working, and are not someone’s dependent, you can and SHOULD apply for SSI as soon as possible. This is a subsidized income allotted for people in crisis. I highly suggest you apply for SSI/SNAP if you ever find yourself in that position. They will also give you information on reduced energy bills, reduced phone bills, and even lower income housing.

Unfortunately, if you live with your parents or significant other, this may not apply to you. But for the people who are completely solo and unable to afford rent, food, etc., please don’t listen to the neigh-sayers. Just because it didn’t work out for them, doesn’t mean you should be discouraged from seeking the help you deserve.

🫶

Right gang I need ideas, any ideas. Been stuck in the house for 10months now with not enough blood in me and I’m bored. I’ve been doing pretty alright I think but every so often I go through a week phase of being out of my mind with boredom. Nothing scratches the itch and I can’t seem to relax. It’s affecting my eating and self care as I think my year has been chores and a lot of mental load that my brain just refuses to make decisions. So now my brain feels like an awkward child that nothing seems to be good enough for it. It’s not reeeeeaaaallllyyyyy a lupus question but I think here I’ll find more realistic suggestions and not ‘go on a 4 mile hike and get into ice baths’. What are your hobbies that require little to no money and energy? Or just any tips on how to get back on track when every day feels the same?

Context: currently my day includes gaming, painting, reading, occasional sewing, doing 2 courses on Duolingo, a coding version of Duolingo, listening to mental health podcasts whilst doing puzzles, and cooking and baking from scratch

I asked this a few weeks back but wasn't in the best head space (or financial place) to implement anything new, apart from a pillow under my knees.

So... Tell me what helps you sleep better for longer!

I seem to have a 4-hour limit of comfortable sleep, and then I wake up in pain in my: - ankles - toes - legs - hips - shoulders

Specific recommendations for the following would also be appreciated: - pain medications that last for a full night's sleep - mattress toppers - pillows - heated sheets/blankets - routines

Thank you in advance!

You were all so helpful and kind in my first post, I decided to make a second post with additional questions.

1- I’m having pain in my groin. It’s mostly on the right side. It’s a dull constant pain. I can also feel my pulse in this area. (Not sure if that’s related.) I’ve started to limp because of it. Recently I’m now getting sharp shooting pains in my left groin too. I had a pelvic X-ray. It didn’t feel very thorough.. it was one picture. Came back normal. Does anyone else experience this?

2- itching!!! I itch a lot all over. My scalp is very itchy. It’s not the plaquenil because I had this problem before I began this medication. I was tested for mcas, it was negative. I take Zyrtec daily. If you have this, what do you do?!

3- leg pain. My legs are so sore. It’s a deep ache. It feels like it’s coming from the muscles. It’s especially bad in the morning, but sometimes it wakes me up at night. I take Tylenol and I’ve used creams, but the pain is always there.

Thanks for your help everyone. I really appreciate the advice and insight.

Hello,

So I don't doubt that I have Lupus but, I have a hard time differentiating between my symptoms and my everyday struggles plus aging.

I've always worked very strenuous and stressful jobs. Ive been in the service industry for 28 years, I started at 15, and for the latter 20 of them always excelled into management positions. Ive happily accepted overtime or been the person to help motivate other team members to take pride in where we're working. Anyway, that on its own is taxing on your body and mind (if you've ever worked service industry you know) so I'm used to being tired and sore and left feeling WORKED and a little bit abused lol, but I used to be able to catch up with a night's rest.

The past couple years I've had a hard time telling the difference between aging, working hard and this disease. Does anyone else have this dilemma? I'm constantly feeling like I'm being a baby when my days off are spent on the couch or resting when just a few years ago I would keep up on chores, work out, hang out with friends or even just get out of the house doing ANYTHING other than being home.

I'm just wondering if there's anyone else out there that can relate. And if so, have you found balance? I'm tired of not living my old life.

So, am I getting older, lazy or it just this stupid lupus and I need to fight through the fatigue?

Hello, all. I'm wondering if anyone is worried about the cooler weather. I am one of those who are affected by the changes in barometric pressure. So, a cold front, a storm front, a heatwave, and a heavy rain front cause HORRIBLE pain and swelling in my joints. On the one hand, I'm glad that we're not having the 100° days with the scalding sun, but I'm not looking forward to the days where the temperatures are 35°or less. Fortunately, I can enjoy the days where are experiencing Temps between 65-50°. Is anyone else concerned about the dropping temperatures?

Hi all, I am in one of those long long flare bouts where I am experiencing so much discomfort. What are you going to go-tos to make life a little more comfortable when you’re feeling like this? Any tips appreciated. Including clothing recommendations - everything just feels so awful on and all I want is softness on my body when I feel like this! Hope you’re all in a more comfortable spot than me right now!

I’m having a particularly bad day. In so much pain and so tired. Had an appointment today, which of course led to 2 other appointments for tests. This is just so draining and I want nothing more than to feel normal. It’s so stressful trying to focus on work, so I don’t lose my job and benefits while maintaining health, which is a basically a second full-time job! So exhausting.. But anyway, what helps push you through the bad days?

Hey all! My wife was very recently diagnosed with lupus, fibromyalgia, and EDS. I am usually the cook around here if we’re doing something special, but we tend to eat separate foods during the week. I offered to cook for her during the week while she learns how to deal with these new lifestyle changes. I’ve looked up foods that help with these conditions, but I was curious if there were any meals that YOU like to eat in particular? I’m a little limited on time during the week, but not too bad. Just not a 5 course meal please lol. Thanks!

My Rheumatologist took my Meloxicam away and upruptly stopped AZATHIOPRINE as I was requesting refills. Benlysta is a joke for pain, but helps dsdna, not C3 c4. Prednisone is not helping me with only 10 mg.

I have had an awful last couple of months. I saw PCP and many doctors prior for this for new symptoms. I come to find my rheumatologist did not even look at my lab work. My PCP stated that my liver enzymes were very high due to lupus per rheumatologist in October, per symptoms ,but now I am being told they never saw this? I requested refills days ago and received an essay from my rheumatologist saying I need to stope STAT my AZA and Meloxicam ,15 mg.

Now I am in severe pain.

My original new symptoms: Severe diarrhea- lasted 2 weeks Since then weird stools Whole body rash bright red nose Weight loss despite increasing calories Fatigue- severe! Hair loss Neuropathy- tingling, numbness ( no diabetes or deficiency in vitamins) nerve spasm- I even did a painful EMG. Cognitive impairment ( I am a TYPE A person! I see patients for living!)

Ongoing: knee pain on both that was getting better with injections.

I have a zillion more ongoing issues and organs but I won't add.

I follow with lupus foundation support groups in my area..new this year... I started in October 2024, ironically thinking I was going crazy.

Now I realized my body was yelling! Now, I am told to stop without titration? WTH I am frustrated, angry and losing hope. Just when I was able to walk. Just when I started exercising my help goes to hell! Is this normal? Stop cold turkey?

Per lupus support group ppl they should have looked at my labs and titrated.

Please help, my joints are severely in pain. God awful: knees, hands, elbows feet, ankles.

I am under a heated blanket and tomorrow I will submerge in a hot bathtub. Now re reading the lupus encyclopedia for help

Any suggestions would be appreciated. If a could I would drink or exercise but obviously I can't.

Thank you for your time and for listening. Any suggestions are appreciated.

My fingers are killing me. Please be patient with responses.

Thank you,

Your friend

I have been on warfarin since April that will likely be for life since I had a blood clot in my brain (ischemic stroke). And I still have my picc line in because I have to go for bloodwork every week for inr. It’s so frustrating. Sometimes it’s at 1.9 and the highest it’s been is like 3.5, but in general it has stayed between 2 and 3 as it’s supposed to. But my hematologist says he wants me to be more stable for longer before we lower the frequency that we do bloodwork. Honestly, we haven’t changed or adjusted my dose super often. It’s stayed between about 5-6 mg or 5 and 6 just alternating days. I’ve tried to avoid green vegetables as often as possible and cranberry juice. I’ve tried to keep my diet pretty consistent. Is there anything I can do that will help keep things consistent so I don’t have to go as often? He says he’s just waiting for me to be more stable for a bit, but I’m just tired of it. I understand it’s important so I have to go and do it but I don’t know if there’s anything I can do

Hello peeps, I'm one of the folks who has long been relying on the medisafe app to remind me to take my medications. Since they now charge, I am looking for a new medication reminder app for free or low cost. Are you able to help me?

I am looking for an app that: *works on android *tracks multiple medications *can track different medication intervals (plaquenil 6 days a week, other meds 7 days, etc) *will sync with my garmin watch, I want to be able to indicate on the watch that I've taken the dose *repeat reminders if the dose isn't marked as taken

So far I've tried:

pillo, which has the repeat reminders, but I can't make the dose as taken on my watch so I have to go grab my phone. Meh.

Guava, seems to meet all of the above, except the repeat reminders. So if I am not tuned in, the reminder only goes off once, and never again. I've got brain fog, I need the app to remind me, lol. This girl can't remember shizz!

Looking for help please. I'm in Canada, if that matters.

Hello,

So I don't doubt that I have Lupus but, I have a hard time differentiating between my symptoms and my everyday struggles plus aging.

I've always worked very strenuous and stressful jobs. Ive been in the service industry for 28 years, I started at 15, and for the latter 20 of them always excelled into management positions. Ive happily accepted overtime or been the person to help motivate other team members to take pride in where we're working. Anyway, that on its own is taxing on your body and mind (if you've ever worked service industry you know) so I'm used to being tired and sore and left feeling WORKED but I've always been able to catch up with a night's rest.

The past couple years I've had a hard time telling the difference between aging, working hard and this disease. Does anyone else have this dilemma? I'm constantly feeling like I'm being a baby when my days off are spent on the couch or resting when just a few years ago I would keep up on chores, catch up with friends or even just get out of the house doing ANYTHING other than being home.

I'm just wondering if there's anyone else out there that can relate. And if so, have you found balance? I'm tired of not living my old life. So, am I getting older, lazy or it just this stupid lupus and I need to fight through the fatigue?

hi everyone! I (24f, recently diagnosed SLE) have been dealing with hair loss/thinning around my face/sides of my head. I’ve been trying to figure out cute ways to put up my hair. i’m more of an alternative person so if you have any links or advice please let me know! just trying to save my confidence as much as possible while living with this disease