Lupus

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Hair restoration

Hair restoration

I discovered and confirmed my lupus diagnosis after having a huge rash on my scalp. Felt like a 2nd degree burn. Couldn't comb hair and head was on fire. At first diagnosed with discoid, after meeting my rheumy and blood work I was confirmed SLE. Scalp cleared after losing lots of hair, and the rest being in poor condition. You know the drill. With good supplements and hair growth products (not rogaine) my hair returned to it's former fullness and shine over a few months. Fast forward 5 years… read more

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I am experiencing pain in my legs with swelling, tremor, and weakness. Tips on managing these symptoms?

I am experiencing pain in my legs with swelling, tremor, and weakness. Tips on managing these symptoms?

This isn't a new symptom just much worse than usual. It's going on a week like this and keeping me down. I really need to be able to function somewhat. I would truly appreciate some advice from others dealing with this.

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Knots under skin?

Knots under skin?

Does anyone have knots under their skin? Sometimes they’re sore and sometimes they’re not. My primary care just felt of them and said she didn’t think they were anything to worry about. I have them around my ribs and in the back of my arms. Haven’t really noticed them anywhere else.

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A MyLupusTeam Member said:

Yes, I think they are called subcutaneous nodules, these occur when inflammation in your joints reaches certain level. These are common occurrence with… read more

posted about 2 hours ago
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I'm curious, does anyone here get chronic neck pain with no erosion found on x-ray?

I'm curious, does anyone here get chronic neck pain with no erosion found on x-ray?

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A MyLupusTeam Member said:

Yes I get neck pain. I have cervical stenosis and bulging disks. Also, the occipital region ( where spine and skull meet) get very painful in the days… read more

posted 2 minutes ago
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Does anyone else also have Ehlers Danlos Syndrome?

Does anyone else also have Ehlers Danlos Syndrome?

EDS is genetic, I got it from my moms side of the family and I passed it on to both my kids.l. What I thought were EDS exacerbations turned out to be lupus. Wondering if there were others with both here.

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A MyLupusTeam Member said:

@A MyLupusTeam Member you're welcome! I'm actually off to my genetics consultation soon to confirm the type. It should be easy to contact the genetics… read more

edited, originally posted about 6 hours ago
9 medium

ENA markers

ENA markers

They just completed all of my ENA lab work with a positive Smith and a ridiculously high JO1 level. I havent had my follow up yet with my rheumatologist to discuss the results about the changes but has anyone else tested abnormally high for JO1 levels? What did it mean? Not too much I could find besides its connection to polymyositis.

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A MyLupusTeam Member said:

@A MyLupusTeam Member I feel you on that one , they just started finding autoantibodies fir Schleroderma and MCTD on my panels along with sle which… read more

posted about 13 hours ago
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Plaquenil

Plaquenil

Has anyone noticed tenderness in their breast, while taking this medication? My tenderness has been going on for over a month, sometimes so very painful!! So I was just wondering if it's just me ?

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A MyLupusTeam Member said:

I have noticed edema in my chest and clavicle area and shoulder / neck but nobody knows why

posted about 14 hours ago
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Disability Attorney in New Mexico

Disability Attorney in New Mexico

Hi everyone! Can anyone recommend a SSDI Attorney in New Mexico? Just got denied on my initial SSDI application. I think I want an attorney to assist on my appeal.
Thanks! Hope everyone is having a good day. :)

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I've been having issues for years with fatigue and pain mainly in my neck and hands and various infections. Now I have a red rash on my

I've been having issues for years with fatigue and pain mainly in my neck and hands and various infections. Now I have a red rash on my

face. This blood workup (this is third one all with negative results) and it was positive for ANA and ANTI-DNA DS. Being referred to rheumotologist for another workup. Everything I have read has pointed to Lupus. My doctor just called and she just said it warranted more testing. Just wondering what other tests are there?

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A MyLupusTeam Member said:

Thank you very much! I see a few I haven't had done. It's frustrating being in limbo and waiting for a possible diagnosis.

posted about 6 hours ago
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