Why wear a ribbon?

MDJunction to me

"For me MDJunction means I am no longer home alone all day. It means having friends who not only understand me but care for me as well. I am grateful to MDJunction for creating a world where I fit in just perfectly." (Yvonne802)
We comply with the HONcode standard for trustworthy health information:
verify here.
Lupus Online Support Group
A community of patients, family members and friends dedicated to dealing with Lupus, together.
Join This Group
Group Home   Forums   Articles   Members (352)   Diaries   Leaders   Guidelines
Related discussions:
08/12/2008 03:57
AliciaSA
Purple Ribbon
Posts: 45
Member

Send a PM
Give a Hug
I learned about three weeks ago that I have lupus. I was diagnosed a year ago with fibromyalgia, so it's a doubly whammy! I've been reading up on the website and I want to know more about flourescent lighting and how it affects lupus patients. Can someone enlighten me?

Popular posts by AliciaSA
    Tired
    Bad breath?
    Sun question
Reply  


08/12/2008 13:21
mumeva
Purple Ribbon
Posts: 284
Group Leader

Send a PM
Give a Hug
I am very sensitive to open and uncovered fluorescent lights and some which are covered. I get very fatigued, achy joints and I also get the malar rash just as if I were outside in the sun. I believe that the exposure is the same as the sun the (UVA and UV lights. I just try to avoid them especially the sun. I wear sunblock every single day (85) neutrogena. I sure hope this helps you.

Eva

Reply  


08/13/2008 00:09
AliciaSA
Purple Ribbon
Posts: 45
Member

Send a PM
Give a Hug
Thanks so much. I'm also wondering about the rash I get on my face and neck. I wear SPF 100 every day and I still have a rash. Is this normal and I just have to live with it?

Popular posts by AliciaSA
    Tired
    Bad breath?
    Sun question
Reply  


08/13/2008 10:41
mumeva
Purple Ribbon
Posts: 284
Group Leader

Send a PM
Give a Hug
Do you go out in the sun? How sensitive are you? I wear the sunblock every day and just driving to the store I get the malar rash even though I'm wearing sunblock. So maybe your just very sensitive to light in general like me. When I'm wearing sunblock and get the malar rash it doesn't really bother me but if I don't wear the sunblock and I'm in the lights or sun the malar rash starts to burn and sting. I also wear over the sunblock a make-up by clinique that has sunscrean in it and it does help.

Eva

Reply  


08/14/2008 10:07
AliciaSA
Purple Ribbon
Posts: 45
Member

Send a PM
Give a Hug
Thanks. I'm not sure if I'm sensitive to the sun. I've been an outdoors person, especially on family vacations and I've had the malar rash for so long, not knowing what it was that maybe I am. Also, my eyes have ALWAYS been very sensitive to bright light. I don't go anywhere without my sunglasses. Is that also related? Sorry, lots of questions!

Popular posts by AliciaSA
    Tired
    Bad breath?
    Sun question
Reply  


08/14/2008 14:20
mumeva
Purple Ribbon
Posts: 284
Group Leader

Send a PM
Give a Hug
My eyes are very sensitive to light as a matter-of-fact I wear sunglasses at night when I am a passenger in the car. And as far as I can remember even as a teenager I have been sensitive to the lights. I don't really know if its related but my guess is yes. I just try to avoid the sun and fluorescent lights. Its difficult because I enjoy the outdoors so much. I go outside around 7 pm here when the sun just starts to go down and I enjoy that time of the evening anyways. Thats why were all here is to help with answeres.

Eva

Reply  


08/14/2008 18:14
sgmillington
Posts: 1
New Member

Send a PM
Give a Hug
Hi, my name is Scott and I'm newly diagnosed with Discoid Lupus. I know it's not systemic, but I'm still kinda freaked out. I've known for about 3 months now, and have facial rash that I just can't seem to get rid of. Doc has me on cortiosteroid. I've been in denial, til now. I've been wearing spf70, but still coach football and have games in the blazing sun. I get severe migraines after extended exposure.

Sorry to crash your discussion, but just need to talk to someone. Has anyone seen any groups that might include any men dealing with this?

Reply  


08/14/2008 18:56
fibroforever
Purple Ribbon
Posts: 898
Group Leader

Send a PM
Give a Hug
Hi Scott. You have every right to be freaked out. It doesn't matter what kind of Lupus you have. It's not fun, and you still need someone to talk to.

There are a few men here. But this group is still growing. I think some get 'shy' at times. Hopefully, they will see your posting and speak up.

Welcome to the group!

Amy

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
Reply  


08/15/2008 07:31
spete87
Purple Ribbon
Posts: 11
New Member

Send a PM
Give a Hug
Scott- No type of Lupus is easy to come to terms with. I was diagnosed in May with SLE, which affected my heart,lungs,kidneys and blood. Needless to say, I am no longer able play football for the University of Northern Iowa. Maybe you've heard of it since you are from Illinois. There aren't too many men on here, but the women are all very knowledgeable and understanding. As far as your migranes from sun exposure, maybe try moving practices a little later when the sun is not so powerful if you can (If you are the head coach, should be no problem). Or, maybe try skipping parts of practice you aren't really involved in to take a break from the sun. As it gets later in the year, hopefully the colder weather will help as the sun gets weaker and you are more covered up. Good luck this season
Sam P

Popular posts by spete87
    New here
    Tired
Reply  



Start a New Discussion

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice. Read more.
Contact Us | Bookmark Us | Add a Doctor | For Doctors | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | Advertise
Copyright (c) 2008 MDJunction.com All Rights Reserved