diagnosed with lupus in Feb Questions

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Regular Member

Date Joined Jan 2017
Total Posts : 46
   Posted 3/20/2017 6:33 PM (GMT -6)   
I was diagnosed with lupus in Feb and I have a couple of questions. my hair is starting to fall out and my eyelashes have fallen out. i notice that if Im in the sun for the afternoon the next day I have a flare. If I get very stressed I have a flare. the stress and the sun usually give me bad enough flares that I have been hospitalized. Is this normal for lupus. Any feedback would be much appreciated. Dustmite.

Forum Moderator

Date Joined May 2005
Total Posts : 7468
   Posted 3/20/2017 6:52 PM (GMT -6)   
Yes, many Lupus patients find that the sun, or even florescent lights, cause disease reactions - rashes, inflammation, fevers, etc. Big box stores such as Walmart cause me to immediately become stressed, grouchy, achy and tired.

Often Lupies use sun-protective clothing like that offered by Coolibar, UV Skinz, and others. SunGuard offers a product you put in the wash to add sun protection to your regular clothing. Hats and umbrellas! You can get a Dr's order to get darker-than-normally-legal sun tint on automobile windows.

Stress of any kind can also cause Lupus to act up. It's good to remain as low-stress as possible. I find that if I keep my food, exercise, and sleep fairly steady, I am more capable of withstanding other kinds of stresses that come my way.

Best wishes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Mar 2017
Total Posts : 5
   Posted 3/25/2017 10:26 PM (GMT -6)   
I see that you are recently diagnosed with lupus. Have you tried contacting the lupus foundation? They have some great mailings they send out, also the website lupusandme sends out free lupus journals. The book by john Hopkins hospital called lupus encyclopedia is an excellent resource to purchase and have around.

I am a mother and have noticed that not only having a routine for the kids but also for me really helps me to balance out my "spoons/energy" for the day/week. This might help with some of that fatigue otherwise Lynwood had great tips

Forum Moderator

Date Joined Jun 2006
Total Posts : 1645
   Posted 3/26/2017 11:17 PM (GMT -6)   
Hi Dustmite. I've posted this before, but I want to share it again. My rheumatologist has an acronym for things that cause flares:
crapW (pronounced crap-wa)
S- Stress
H- Hormones
I- Infection
T- Trauma (injuries)
W- Weather (sun, rain/overcast, cold) Everyone is affected differently.

Kelsey.dossa I want to thank you for the great information. I've always been a spoon theory advocate. Now I want to read your other tips! Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry
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