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A lupus support and discussion community for patients and caregivers to share information about autoimmune disease, SLE, flares, treatment, and more.


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Gene testing, precision medicine, and shared information

Brian's journal

Brian

gene-testing-precision-medicine-and-shared-information

Dear members, How should we be thinking about our genetic information when it comes to disease? It’s a question many of us are asking here on Inspire, sometimes very intensely, depending on the nature of the disease. The information we get from our genome can have a direct impact on so much, including how, or if, we can be treated for certain types of disease -- that is the nature ... Read More

To fight for opioid therapy, an Inspire member calls for action

Chronic-Inspire's journal

Chronic-Inspire

to-fight-for-opioid-therapy-an-inspire-member-calls-for-action

By Radha_Inspire Digital Editor, Inspire “I think it is time to organize ourselves into a lobbying group somehow.” Constance Small (acorns02459) wrote that on October 19th on Inspire as part of a conversation about what happens when it becomes difficult or impossible to get opioids to treat chronic pain. “I would be very happy to join anyone who would like to organize a campaign to ... Read More

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LupusConnect

Anyone ever use Voltaren gel?

In: Treatment

Laurie88

anyone-ever-use-voltaren-gel

200103

I was given this gel to try from my aunt who also has joint pains. I was in so mush pain in my ribs yesterday from chronic costochondritis that I figure WTH I might as well try it on my chest and ribs! Guess what? I think it actually did help relieve some pain. Anyone else out there use it that has Lupus or FM ... Read More

LupusConnect

nighttime stretching

In: Signs and symptoms

Sharonc-1

nighttime-stretching

200103

Hi fellow Lupies. I am a 57 year old female diagnosed 3 years ago with Lupus. I know I had it much longer but took a long time to diagnose. Since 2006 on and off during the night I wake up in a full body stretch from the tip of my toes to my head. The stretch is so extreme that it causes leg, feet and toes to cramp. Also causes pain in muscles, tendons & ligaments all over as the stretch ... Read More

LupusConnect

You don't look sick !!

In: Lupus and men

larryjns48

you-dont-look-sick-8

200103

I just came out of a Flare that lasted 6 - 7 weeks and I still hear friends and family say " you don't look sick ". I've been looked at in the face and told I was liar looking for sympathy. My last flare consisted of Vitamin D levels near 30 - 35(200-400 are normal) and I was in severe muscle/joint/bone pain. 50,000 units of Vitamin D weekly brought my levels up over 100 in 3 months ... Read More

How to Keep from Falling on Icy Conditions

Duvie's journal

Duvie

how-to-keep-from-falling-on-icy-conditions

Something that rarely happens in New Orleans is icy or snowy conditions. I let our bigger 15 yr old dog out to do her business and she fell on the back concrete porch with a 3 inch step down due to the ice. I went out and helped her up and was slipping myself. When it was time to let her in I went searching for her and she was laying on her belly on the concrete by the pool struggling ... Read More

Anyone Know This Rash?

Fireflies_Are_Magic's journal

Fireflies_Are_Magic

anyone-know-this-rash

UPDATE: It went away on its own. Neither the doc nor the skin doc knew what it was (both prescribed anti-itch creams for the future), but the neuro thinks it is part of whatever overall autoimmune disorder and/or small-fiber-neuropathy that I have. It's also possible it's related to a small cyst I've had for the last 12 years (located on top of [my left] collarbone ... Read More

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Sharing Special Needs Diets, Foods, & Ideas

Duvie's journal

Duvie

sharing-special-needs-diets-foods-and-ideas

"Recipe Sharing Group" This is a site that needs attention with members sharing their experiences with whatever their special Diet is so we may help others to transition easier to their special diet. I AM NO CHEF and have just recently taken over the cooking, errands, shopping, etc. As a caregiver for more than one patient and myself, it can become stressful but doable. My better-half ... Read More

LupusConnect

Stress

In: I have lupus

Rachelsara

stress-76

200103

Since ive had Lupus i find myself stressing easier. I have discoid and cns Lupus and brain involvement so im thinnking brain is part of automatic stress that brings on face rash. Then i was in flourescent lights and i got so stressed under those lights i popped a bad rash. Sometimes i feel alone with this craziness i was wondering if anyone has automatic stress ... Read More

LupusConnect

Nurse Practitioner vs MD-Rheumatologist

In: I have lupus

hopeful1116

nurse-practitioner-vs-md-rheumatologist

200103

My doctor is booked for the next 3 months and is unable to see me for my 2-month followup. As a result, he has told the receptionists to schedule me to see the nurse practitioner instead. Has anyone else had this happen to them? I'm not sure if a NP is qualified to treat my lupus or not or even interpret my blood results. I don't like not being given a choice either. I was "told" to ... Read More

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