Best products from r/lupus

I'm so sorry :( I am in a similar situation right now, but something I find that helps a little with the pain is to force yourself to sit up (for about 15 minutes; it seems to help to redistribute the swelling to your thighs and legs), making sure you have your blankets wrapped around you so you stay warm. Gentle stretches (roll your head (gently!) in a circular motion to get those kinks out of your neck) and try to lift your arms above your head. If you can do it, are there any easy-to-digest leftovers in your fridge that you can reheat in your microwave?

One thing that has helped me is Neocate jr, which is easy to absorb, since it is all absorbed in the small intestine, which is super helpful if your kidneys are leaking protein. A low-residue formula like Neocate reduces a lot of the work the kidneys have to do. Warm up some water in the microwave (not too hot), add a few scoops (check the label for dosing info). The Unflavored version (which I recommend) doesn't taste great, but it will get you through until you feel a little stronger.
Order here:
http://www.amazon.com/Neocate-Junior-Unflavored-14-1-Case/dp/B00P6ZNBIW

Also, if you have any baby food hanging around, eat that. (I like sweet potatoes and apple).

Fatigue can be a real monster. Try to get some food in you as soon as possible so you don't grow weaker, but only eat as much as feels comfortable. Don't try to shove things down :)

/hugs and squeezes

The Environmental Working Group has a comprehensive list of the best sunscreens and the ones you should avoid: EWG Best Sunscreens . Take a look!

I like the brands Kiss My Face and Neutrogena, personally.

And make sure not to rely on sunscreen alone! Sunscreen has to be reapplied in good quantity on a regular basis. It’s good to wear long sleeves and a hat, as well, preferably in fabrics with UPF.
Examples of UPF clothing lines are Coolibar and Mott 50. . Places like Dicks Sporting Goods also carry sun protective clothing.
You can also use something like Rit Sun Guard to treat your clothes and give yourself extra sun protection for up to 20 washes.

You might also consider investing in a sun blanket or an umbrella with UPF as well.

Stay in the shade and avoid direct sunlight. Photosensitive lupus patients are supposed to avoid going outside in the sun between 10 AM and 3 PM, as that is when the sun is strongest.


Stay safe and have fun!

I've heard that certain types of water don't quench thirst like other water. I can't remember what the deal was, it's been a few years, but it had something to do with the type of water you're drinking. Some water doesn't really satiate the thirst and stick around and go where the hydration needs to be in the body like other water. I can't remember the name, but there was some device that does something to the water to make it better for you and more hydrating.

Found this news story from ABC at the link below, and it has to do with the alkalinity of the water you are drinking. Distilled water, for instance, is very bad for you, because all the good stuff has been taken out of it. It can actually cause bone loss, which it did to me for many years before I got a clue that I shouldn't be drinking it. You can also get alkaline test strip paper and use your saliva to tell how alkaline your system/body is. Foods like sugar can cause your body to become more acidic and some fruits and things like pineapple can cause the body to become more alkaline. Having an acidic system can cause your body to be more likely to lean toward health issues, while having an alkaline body is better for your health.

There are at home machines that can make alkaline water for you, and there is also alkaline water you can buy. You can also add drops to your water to make it more alkaline. It's good to use the test strips to test the bottled water you are drinking, because there are many bottled waters on the market, even name brand bottled waters that are actually less alkaline than is recommended for human consumption. Possibly you are drinking one of these waters and it is leaving you dry.

https://abcnews.go.com/Health/alkaline-water-claims-offer-greater-hydration-health-benefits/story?id=33268980

Here is the test paper like I have at home. I've had it for a very long time and it still works fine. You can use it to test the saliva or urine that comes from your body to see where your system stands. Just tear off a small strip, test it, and compare it to the colors on the cartridge to see where your pH level is at, and respond accordingly with whatever changes are needed to make your body more alkaline and more healthy.

https://www.amazon.com/Micro-Essential-pHydrion-dispenser-5-5-8-0/dp/B0001SR4NM

And here is an article on the importance of having an alkaline system...

https://www.livestrong.com/article/444199-what-are-the-benefits-of-alkaline-in-the-body/

Hey sorry your feeling lousy :( lupus sucks and that brain fog is hard to cope with. My kidneys are being attacked so be careful and make sure to get a urine test for proteinuria! That could be part of the problem. I've been to holistic doctors as well as western medicine (cellcept /cytoxan) . My remedies are to eat a lot of bone broth bowls with veggies, and take the proper supplements to feed your body the nutrients it needs. Diet and supplements are vital imo to long term health. Here's what I take now and my Brian fog is long gone (still working on the kidneys) :

--Morning

--I start with shake containing:

--Orgain meal powder - amazon

--Orgain superfood powder - amazon

                --garden of life perfect food powder (used to take this a lot, but transitioned to the orgain superfood powder) - amazon

--Flax Seed (store) or Gerbs super seed blend (flax, pumpkin, chia, etc) - amazon

--I then take(these are available at Amazon, locally, or swansonvitamins.com):

--acai/ginger/turmeric blend

--omega 3, helps with heart/blood

--PQQ, helps with mitochondrial repair

--CoQ10, helps heart

--L-Glutamine, helps a bunch of stuff

--glutathione

--Vitamin D

--Vitamin C

--msm

--natto serra (https://www.amazon.com/Doctors-Best-Natto-Serra-Non-GMO-Gluten/dp/B00DBEVTDE/ref=sr_1_3_a_it?ie=UTF8&qid=1534181176&sr=8-3&keywords=natto+serra)

--Sulforaphane from Broccoli Sprout Extract

--cognitex with brain shield

--l-lysine

--circumin complex

--spirulina/astaxan

--magnesium/calcium/zinc

--monolaurin (take on occasion)

--Lunch

--multivitamin with no iron

--flaxseed oil caps.

--reserveratol

--alpha lipoic acid

--acai/ginger/turmeric

--ginger root

--enzymes

--lung essentials

--olive leaf extract

--dhea

--milk thistle

--berberine

--swanson Dynamic Balance Blend Soil-Based Organisms

--fenugreek

--plant sterols

--Dinner

--betaine hcl (only on days with heavy meats)

I would definitely check out /r/SkincareAddiction/! The lovely peeps in there give excellent advice. Specifically this side wiki. You can always post there, and they can help you, but I can try, too.

Things I need to know:

• Face only, or do you want something for your body?
  
• Are you acne prone?
  
• Are you sensitive to anything specific, that you know of?
  
• Do you wear makeup?
  
• How much are you in the sun?
  
• Do you plan on getting all sweaty?
  
• What's your budget?
  
  If you never answer me, just keep this in mind: The amount you need to get the SPF labeling on the bottle is about 1/4 teaspoon for just your face. Since SPF is on a logarithmic scale, 1/8 teaspoon of 100 SPF does not equal 50SPF, it measures like 10SPF. waa-waaa.
  
  For me, it depends on what I'm doing. My everyday under makeup is EltaMD Clear, SPF 46. Super light weight, soaks in fast, I really like it. Totally worth the price (for me). If I'm going outside in the sun for any length of time, I go with Neutrogena Age Shield Face Lotion, SPF 110. Basically, any SPF over 30 is what's important, the difference between 30SPF and 100 isn't that much. :/
  
  edit: du'oh, formatting.

I love my Bed Buddies microwavable heat packs for keeping warm and toasty. Booties with removable insert for my feet https://www.amazon.com/Carex-Bed-Buddy-Warming-Footies/dp/B000KBLKTO (Don't use them to walk around on wood or tile though. Very slippery.) and the back wrap is good for anywhere, really. https://www.amazon.com/Bed-Buddy-Deep-Penetrating-Back/dp/B015RY4P90/ref=pd_lpo_vtph_121_tr_img_1?_encoding=UTF8&psc=1&refRID=N26CC3NS3MFY14X27VRB

They are basically cloth bags that contain rice, so you can make you own at home out of a tube sock, for example. Do not microwave for more than 2 minutes. Start at 1 minute and go up from there if warmer is desired.

Warm feet = warm body. I have a foot warmer heated rubber mat under my desk at work. This or another brand like it, and they come in different sizes. Smaller is fine. https://www.amazon.com/Cozy-Products-FWB-Warmer-Warming/dp/B0013V1PYA/ref=sr_1_12?s=home-garden&ie=UTF8&qid=1521263745&sr=1-12&keywords=under+desk+heater+for+office

Some places will use the UV glaze on it. The place I go doesn't. Whatever they use is like cement though. No getting that stuff off at home. But your nails won't break either. Now the one powder I like has a cool effect in it, and that requires a coat or two of gel which then requires the light.

The powder lasts a lot longer if they use what my place uses. I had it on my fingers for like 3 months because I just couldn't get over. My nails grew out so much it just looked like the tips were done. It was pretty neat looking actually. I just kept trimming them. And unlike the gel, nothing cracked when I trimmed. When my thyroid behaves, my hair and nails grow so fast.

But I am going to order something like this again and I still put sunblock on my hands before I go. Just in case I choose gel. The first time I had it done, I just felt this burning and I thought it was normal. Pain to me is normal. I'm sure you can relate. Then the next day it was all red and irritated. But with sensitive skin, I didn't put two and two together until the next visit. That's when I started using sunblock before going. Some of the salons around here provide the gloves and launder them, but I can see where that is expensive (by their hiked prices) and why many wouldn't do that. But nobody has issues if you bring them in usually. Most are pretty fascinated by them.

do other people take fish oil? how have you found it??

while this is a mice study, relating to a specific lupus trigger (silica), i thought it was interesting.
"According to Harkema, the DHA could be changing the way these cells, also known as macrophages, react to the silica in the lungs and somehow alter the immune system's response."

i took some and noticed an improvement, but stopped because i was getting an aftertaste of lemon, which is lame, i know.

i spent ages researching which was best; £40-50 a bottle, but they're amongst the best.
nordic naturals; https://www.amazon.co.uk/d/Essential-Fatty-Acid-Nutritional-Supplements-Oils/Nordic-Naturals-Ultimate-Omega-Fish-Soft-Gels/B002CQU564/ref=sr_1_1_a_it?s=digital-text&ie=UTF8&qid=1492902398&sr=8-1&keywords=nordic+naturals+oil

Found it! Apparently she actually ordered it online, but it's called Medline Remedy with Olivamine Skin Repair Cream. The people of Amazon agree with me that it's delightful... nearly 5 stars. :)

https://www.amazon.com/Medline-Remedy-Unscented-Olivamine-Repair/dp/B008107QBM/ref=sr_1_4?gclid=EAIaIQobChMIt-vFrq_Y5QIVycDACh2ECA6UEAAYASAAEgIN7fD_BwE&hvadid=177783604484&hvdev=c&hvlocphy=9018901&hvnetw=g&hvpos=1t1&hvqmt=b&hvrand=14904278741328473427&hvtargid=kwd-2367007645&hydadcr=21910_9712319&keywords=medline+remedy+skin+repair+cream&qid=1573138979&sr=8-4

Ezy Dose Weekly AM/PM Travel Pill Organizer and Planner │ Removable AM/PM Compartments │ Great for Travel (Large) https://www.amazon.com/dp/B00609IOWQ/ref=cm_sw_r_cp_api_i_kv21DbHD3YMJY

I use this one and have had for over 3 years and it’s great! Only fill once a week.

I am no expert that is for sure ! I have nephritis IV on steroids , cellcept , blood pressure medication , just found out I have steroid induced diabetes but only because I have a 32 day yeast infection going on ! All of which have side effects and more medication to deal with them !
Not trying to sound like I have it worse because every one has their own shit and mine is no worse than the next gals !! I was a size 4 in February and now if 10s fit I am happy , got the big ol pie face , loss of hair and swelling . But here is the thing .... I got these cute chemo "hat" :

https://www.amazon.com/gp/aw/d/B072372Y82/ref=mp_s_a_1_1?ie=UTF8&qid=1499278485&sr=8-1&pi=AC_SX236_SY340_QL65&keywords=chemo+scarf&dpPl=1&dpID=41CgF4D4ARL&ref=plSrch
Super comfy and not too warm for the summer !
I get sick and tired of dealing with all this shit too ! But there are days when a cool swim in the pool or my husband makes me belly laugh or the sunset is just perfect that I know I gotta plug on ! Find your little things !

NOW Supplements, Instant Energy B-12 (2,000 mcg of B-12 per packet), 75 Packets https://www.amazon.com/dp/B0019LVHEC/ref=cm_sw_r_cp_taa_GNW0CbYC6WBQE

These help. They are more effective than B12 shots, in my experience.

I have two sets of these and I really like them, they are very roomy and I like that the individual boxes are not too bulky to put in my purse:https://www.amazon.com/gp/product/B07H2GM46Y/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

A very in-depth, but accessible book about lupus, as recommended by my rheumatologist:

https://smile.amazon.com/Lupus-Book-Guide-Patients-Families/dp/0199929408

This one isn't strictly about lupus, but put me on a dietary/lifestyle change path that put my lupus into remission:

https://smile.amazon.com/Autoimmune-Solution-Spectrum-Inflammatory-Symptoms/dp/0062347489

This one is also more general to autoimmune diseases, but contains lots of helpful info:

https://smile.amazon.com/Autoimmune-Wellness-Handbook-Chronic-Illness/dp/1623367298