Lupus

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Ways to stave off a cold-what do you do when you were sick?

Ways to stave off a cold-what do you do when you were sick?

Because of needing immume suppressed we cant really have immunity boosters and im trying to stave off a cold. Ive been told that gargling vinegar? Maybe some zinc? I definitely know about honey? Honey and tea?

A MyLupusTeam Member said:

Oh we were planning on a disneyland trip but havent gone yet. Its a lot of planning involved we'll see! The last few vacatoons ive been on ive been sick… read more

posted 3 days ago

Have you heard that Kim Kardashian might have Lupus since she been having joint pain and swollen hands?

Have you heard that Kim Kardashian might have Lupus since she been having joint pain and swollen hands?

What do you guys think about that? I mean I wouldn’t wanna wish this on anyone! But my thougth was if she has it anyway? Then I hope she talks about it all the time and really documents every last bit of it to the entire world. So that more ppl out there can understand what rough, painful and really exhausting lives we really live. And exactly how difficult it’s for us Lupies to live with it.

A MyLupusTeam Member said:

I don’t think this is Kim’s fault. I feel the doctor is not very good. He’s on the board at Cedars Sinai so I’m not shocked by this. My rheumatologist… read more

posted 3 days ago

Does anyone use CBD or medical marijuana? Does it help?

Does anyone use CBD or medical marijuana? Does it help?

I’m tired of being miserable and have had several people including drs recommend CBD or medical card. Does anyone do this and does it help?

A MyLupusTeam Member said:

Amen NikiV,
I totally agree!! I love it all, lol, & since I started using it, I don't need my valiums hardly ever! It is a huge game changer! God… read more

posted 3 days ago

Nerve tingles

Nerve tingles

Does anyone get non painful nerve zaps in their body? I get a zapping feeling but it isn’t painful in random spots on my body. Mostly my nose and lips. I also get these weird crawling sensations in my scalp, on my face, and weirdly enough, one of my knees, daily. It happens on my face more than anywhere else. I’ve had an MRI of my brain to rule out anything like MS and that came back clear. I’m just wondering if lupus isn’t attacking my nervous system. I had an appointment scheduled with a… read more

A MyLupusTeam Member said:

It's the name of this illness. So random, I don't pay attention to it any more. It can make us nuts if we sit around wondering what everything is.
Just… read more

posted 3 days ago

Burning & itching of feet

Burning & itching of feet

Does anyone have severe burning, itching & pain in feet? Especially at night? The only thing that seems to help is ice cold water & neurontin. Also, have been having a lot of swelling in feet, but may be from prednisone.

A MyLupusTeam Member said:

That was my first thought.

posted 3 days ago

Ear pain

Ear pain

Does anyone’s ears hurt? When I flair my ears hurt so badly. And I get knots in my jaw joints. Under my skin all around my ears and jaw hurt so bad especially when pressed on. Wondering if anyone else has this issue. I suffered from a lot of ear infections as a kid. I’m wondering if this is why.

A MyLupusTeam Member said:

Extremely and they itch. Steriods are the only thing that stopped it.

posted 4 days ago

Help! Struggling with pain control

Help! Struggling with pain control

I have lupus, RA, and Sjögren’s. I am currently taking Neurontin 100mg twice a day as needed and 300mg at night. I also take 10mg of Baclofen at night. I take so much Ibuprofen I am honestly surprised I don’t have a hole in my stomach. I have tried to tell my rheumatologist about the pain but he says the only thing that will take care of the pain is steroids so he just gives me another round of it. It takes the edge off but I don’t ever get any true relief. My PC doesn’t want to… read more

A MyLupusTeam Member said:

@A MyLupusTeam Member the problem with NSAIDS and Prednisone is that they cause heartburn and ulcers. Then will need to take PPIs or H2 blockers to… read more

posted 4 days ago

Is loss of. Memory common and what can be done to boost memory?

Is loss of. Memory common and what can be done to boost memory?

I feel sharp one day .then cant remember things the next. My memory from day to day seems shaky and I forget where I put things and feel like I have to start all over at times.Is this a Lupus issue?

A MyLupusTeam Member said:

I have the same issue as well. Some days it is hard to put my thoughts together. It makes me feel stupid. Hate using that word but it really is how it… read more

posted 4 days ago

How many of you are prescribed pain meds to help with pain.

How many of you are prescribed pain meds to help with pain.

I have Lupus, myositis, and back disease along with other non Lupus issues.Everyday I fight the pain. I start with Tylenol and Motrin in the morning, but by afternoon, I give in and take pain medicine, Vicodin. I feel guilty taking these pills because of the Opiod Epidemic. I take as little as possible to manage my pain and never take them to get high. I am interested to know if others use these meds.
Thank You

A MyLupusTeam Member said:

I take Norco for pain. I try to take them only once a day but unfortunately when I am working I usually require two a day. I try to keep in mind that… read more

posted 4 days ago

I'm just reading about sores in the mouth. Is it "normal" to have your tongue hurt?

I'm just reading about sores in the mouth. Is it "normal" to have your tongue hurt?

I have complained about this issue for several years and no one really addresses it. At first taking lysine helped and the sores and pain were infrequent. But now the pain will wake me up at night. I feel like I'm going crazy that I'm having a tongue issue and no answers. I have started to use Peroxyl and that helps some what with the pain issue at night. This past week has been miserable and has been making it hard to eat.
I did have… read more

A MyLupusTeam Member said:

Prednisone is a real s.o.b. in so many ways but it works almost instantly on mouthsores. I usually pick between dealing with side effects of the MF… read more

edited, originally posted 5 days ago
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