Page 5 of 11 FirstFirst ... 34567 ... LastLast
Results 41 to 50 of 110

Thread: PHOTOSENSITIVITY in LUPUS

  1. #41
    Join Date
    Jan 2009
    Location
    Sylvania,Ohio
    Posts
    1,409
    Thanks
    79
    Thanked 70 Times in 58 Posts

    Default

    Oh Spanglishqueen, YOU sound just like ME when i am in the sun!!! Those are the EXACT symptoms i GET too!! I can Get SO ILL feeling and there are times that it literally "knocks me out" for an hour or 2. I literally CANT open my eyes from how TIRED i can get from the sun. The NAUSEA is AWFUL!!! I throw up sometimes! EWWWWY!!!LOL

    I SOMETIMES can flare IMEDIATELY as soon as i walk out the door. Even in the shade. I noticed for ME, the WORST i get "hit" is in the late morn through the mid afternoon,the peak "sun rays" time. I ALSO get HIT harder IF i am NOT wearing my sunglasses. ANY sun THROUGH my eyes makes it get into my system that MUCH QUICKER. UGH YOU have to pay attention to YOUR reactions, what time it is and if you have glasses on or not to figure out if there is a pattern you SHOULD avoid with the sun. SOmeitmes my symptoms arent AS BAD as others. This disease DOES what IT wants WHEN IT wants.
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

  2. #42
    Join Date
    Aug 2009
    Location
    Northern, VA USA
    Posts
    9
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Cool Sun protection for your own clothes

    If I am in the sun for any period of time I pay for it. I have immediate symptomes and I feel like I was scrapped off of the sidewalk for the whole next day. This is the lupus symptom that I am most indignant about, so I am always researching any way around it.

    Here are some solutions I found...

    The cost of the sun protection clothing has stopped me from buying it for the most part. I did buy some basics from the Lands End Sun Life line, which offers UPF (Ultraviolet Protection Factor) 30-50 depending on what you pick. Here is a link:

    http://www.landsend.com/cd/landing/0...Disp=n,00.html


    There is also a Rit Fabric Treatment that lets you make your own clothes sun protectant. They sell it on Amazon:
    http://www.amazon.com/Rit-Laundry-Tr...2461941&sr=8-1

    I haven't tried it yet, but I intend to!

    Hope it helps

  3. #43
    Join Date
    Jan 2009
    Location
    New Hampshire
    Posts
    340
    Thanks
    0
    Thanked 3 Times in 2 Posts

    Default

    Thanks Lucky and Elle I checked out the website and I may invest in pants but I don't think I'll do long sleeves in the summer not yet
    Spanglishqueen AKA Brenda or "B"

  4. #44
    Join Date
    Jan 2009
    Location
    Sylvania,Ohio
    Posts
    1,409
    Thanks
    79
    Thanked 70 Times in 58 Posts

    Default

    Yeah Spaglishqueen, long sleeves and summer DONT MIX!!! HOT HOT HOT!!!!!!! IM so dang HOT all of the time anymore even in short sleeves! Screw the long sleeves!!! iD SAY SCREW THE LONG PANTS AS WELL, but, my bruised legs arent very attractive these days so i just have to sweat in those! UGH
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

  5. #45
    Join Date
    Nov 2009
    Location
    SE Michigan
    Posts
    130
    Thanks
    5
    Thanked 4 Times in 4 Posts

    Default

    This makes me feel less "crazy" too...

    And as I begin to look at things in a broad scope, I start to wonder if it's not all interconnected afterall.

    I've always had eye issues (I was born 3 months early and have Retinopathy of Prematurity).. I never had many issues with sunlight unless I'd recently had my eyes dilated - granted, that was quite often as a child, but I could always attribute it to that.. As I've gotten older, I'd say around 2004 - age 23 (in retrospect, this is probably when my Lupus reared it's ugly head for the first time), I began needing my Rx sunglasses ALL the time!! I didn't think much of it and wrote it off as my eye issues just making them more sensitive.

    Now, the past couple of years, my husband and I have vacationed in Florida with his family in the summertime. The first day or two, we're usually at the beach non-stop! I love warmer climates because it's a nice change sometimes from Michigan which is typically cooler and I have issues with Reynaud's so my hands and feet always feel cold! However, these past 2 summers, by the 3rd or 4th day down in FL, I would have to spend an entire day or more re-cooping in the condo because I flared up so badly! My mother in law even jokingly asked if I was pregnant last year because I'd gotten sick two mornings in a row (days 3 & 4) and immediately went back to bed until almost 11am both days.. followed by subsequent naps after lunch.

    Looking back on all of this now, we see it for what it truly was.. It's amazing how much of our suffering we try to pass off as other things or us just being overreactive or overly sensitive.. and then we get our Dx, and it's still difficult to allow the Dx to account for these things.. I still find myself sometimes thinking it's all in my head. I get frustrated if I can't do simple things because I "used to be able to."

    Sorry for the ramble.. I just had a bit of an "Aha" moment after reading what you all had said.
    Shannon
    Divorced
    Registered Nurse
    Proud Momma to an 8 month old kitten. She was on death's door when I found her and now she growing up into a beautiful cat, she's my baby.


    Life isn't about waiting for the storm to pass... it's about learning how to dance in the rain.

    God, grant me the serenity to accept the things I cannot change...
    The courage to change the things I can...
    And the wisdom to know the difference.

  6. #46
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,785
    Blog Entries
    10
    Thanks
    1,638
    Thanked 943 Times in 597 Posts

    Default

    NP;
    Most of us have also had those "aha" moments after we received our diagnosis and realized that many things that happened to us, years earlier, was probably symptoms of Lupus. So, you are not alone!

    Peace and Blessings
    Namaste
    Saysusie
    Last edited by Saysusie; 02-02-2010 at 04:44 PM.
    Look For The Good and Praise It!

  7. #47
    Join Date
    Mar 2009
    Location
    Charlotte, NC
    Posts
    629
    Blog Entries
    16
    Thanks
    5
    Thanked 17 Times in 13 Posts

    Default

    I think the sun coming in my bed room window is causing my rashes. The blinds are not closing good. And since I'm not sleeping at night but during the day, i'm getting to much sun though that window. I brought some new blinds but haven't put them up yet. I also need to try to sleep at night.
    But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 40:31

    Take Care,
    Becky

  8. #48
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,785
    Blog Entries
    10
    Thanks
    1,638
    Thanked 943 Times in 597 Posts

    Default

    Wrights, You could be right! My husband put window tints in all of our cars due to my Lupus. But, one summer, we took a road trip to Arizona and rented a van. By the time we got to Arizona, I was so sick that I was bedridden for three days of our vacation. It finally occurred to us that I was exposed to the sun through those windows for 10 solid hours! We vowed to never, ever make that mistake again!!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  9. #49
    Join Date
    Feb 2010
    Posts
    23
    Thanks
    5
    Thanked 0 Times in 0 Posts

    Default

    Wow, you guys! I joined this site so I could learn more about Lupus and I knew sun sensitivity was an issue, but didn't realize how bad it was. Thank you, everyone, for sharing your experiences. I hope one day they are able to find a cure so you can all enjoy the sun once more. *gentle hugs*

  10. #50
    Join Date
    Mar 2009
    Location
    Charlotte, NC
    Posts
    629
    Blog Entries
    16
    Thanks
    5
    Thanked 17 Times in 13 Posts

    Default

    Saysusie so sorry about you trip. It so bad we the flares come away from home. I got some better sun screen It's not greasy like some. I hope it helps. It was "Neutrogena Ultra Sheer" and next to it in target they had the Target brand of the same thing. It cost a good bid less. I bought both to try. My new blinds are room darkening. I think that will help. If not I will put insulated drapes over them.
    But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 40:31

    Take Care,
    Becky

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •