Sun protection

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doodlebee
Regular Member


Date Joined Mar 2008
Total Posts : 60
   Posted 5/13/2008 3:00 PM (GMT -7)   
I am new to all of this and have a few questions about sun protection...

Does the sun still affect you even with sunblock? I wore SPF 70 all over and was out in the sun off and on for maybe 30-45 minutes (an hour max) one day and still got the rash on my arms. I figure if it shows on my arms, it means it's activating the lupus and could affect the other symptoms too. Is that right? Can it even cause disease progression? It seemed to when I was out in the sun before learning I had lupus (pain worsened and ANA went up).

How do you protect yourself other than wearing sunscreen? Do you wear long sleeves even in the hot summer? Do you have to stay completely out of the sun as much as possible even with sunblock on?

Also, is there some UV exposure even in the shade? I have a pretty shady yard and try to stay shaded when I go out with the dogs, but my sister worries saying the UV can get to you even in the shade. I had not ever heard that and wonder if it's true.

I want to be careful and don't want to do anything to worsen my health, but at the same time, I don't want to be overly paranoid either!
~ Bee

God is the strength of my heart! - Psalm 73:26


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/13/2008 3:38 PM (GMT -7)   
Hi Doodlebee,

I am extremely sun sensitive. It seems to have a cumulative affect too. Meaning, I have to add up sun exposure from day to day over any few days.

I'm less sensitive last and this year . . . but for several years, even a trip down to the mailbox was too much. Sun block does not seem to help my rashes, nor does overcast.

I wear long sleeves - long enough to cover my hands - even when I drive. I stand the collar or wear the shirt backward so my neck is easily covered.

I use a golf umbrella as much as possible.

You can get UV rays even from the reflection of sand and water.

Many lupans are not quite that sensitive. And I go in and out of severity. But I have several wide brimmed hats and I am no longer bashful about whipping out that umbrella.

Yes it does cause disease activity in many of us.

I do find some creative ways to enjoy the outdoors. I hike in a beautiful woods with great overgrowth (but still chose early evening to hike). Hubby created a little campfire area in our backyard and we have the grands over for "campfires" several times each summer. We roast weinies and marshmallows and I've kept it really simple so it doesn't turn into a difficult task. I grab the grands last minute we go to see a sunset and play at the park during this sundown time. They find it a blast and I do it last minute so I'm sure I'm up to it. They love the last minute dash.

I also found a great "skin suit" that I wore on our Mexico vacation this year. It covered hands to ankles and worked great while I was in the water . . . but I hid in extreme shade the rest of my outdoor time. Hubby found a great spot of shade on the beach and embellished it with our beach umbrella. Taaa daaaa!!! But in years past, I don't think I could have pulled that off.

I hope you find a good way to enjoy your summer!!! Don't let these difficult new rules stop you from enjoying life. Just find the loopholes and work them!!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


doodlebee
Regular Member


Date Joined Mar 2008
Total Posts : 60
   Posted 5/14/2008 1:19 PM (GMT -7)   
Thanks Rosie, that helps a lot. :-) I'm thinking of ordering some of this: SunGuard sunscreen for clothes. You wash your clothes in it, and it adds SPF 30 protection and lasts for up to 20 washings. Has anyone tried this? If so, I would love to hear how it has worked for you.
~ Bee

God is the strength of my heart! - Psalm 73:26


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/14/2008 6:09 PM (GMT -7)   
*Rosie looks down and blushes* Ummmmm I bought it two summers ago and never tried it. LOL

I do wear men's fishing shirts. I get them at D I C K ' S sporting goods. They are SPF and really help. I just leave one in the car and one in the house and toss it on over my clothes. Because it is a man's shirt, it covers over my hands. If my hands are exposed, they get a really itchy rash.

Good luck with the sun protection!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/14/2008 7:11 PM (GMT -7)   
Rosie, I had forgotten you are about as sun sensetive as I am. I know with the highest sun block I could get 5 minutes is my max time outside during daylight. I am going to try Total Block and Cotz, I got samples. I will let you know if it works. I too bought the sungaurd and failed to try it so don't feel bad.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


jessieb578
New Member


Date Joined May 2008
Total Posts : 11
   Posted 5/30/2008 12:19 PM (GMT -7)   
Hi everyone!
 
My daughter who is 6 has cutaneous lupus. Thankfully so far she's not extremely sensitive to the sun. She can be out there an hour or so with significant spf 70, a bucket hat and whenever possible, long sleeves.
 
She's only been diagnosed a year now, which I'm sure like everyone else, has been a very long year for me. I'm always looking for new spf products and new protection.
 
I've actually come up with a product that may help lupus patients - necessity is the mother of invention right - well, I was buying a bathing suit ($53 I might add) for my daughter that has an spf 50 in it and I was thinking well, how do I know that the spf 50 is enough when she's out there?? Is it good on top of the spf 70 I put on her?  Isn't there a way to tell how bad the sun actually is?? On a cloudy day, is it any better to have her out then?
 
Then I researched more about UV and found that the uv of the sun at any given time may be low or high depending on so many things! For instance, the time of day, location, weather, etc. To which (sorry the long story) I came up with a bracelet that tells you the severity of the sun's uv and can help you properly protect yourself with the correct sunscreen!
 
They are called Sunsign Bracelets.  They're white when inside with no uv and turn to light, medium and dark purple depending on the uv intensity of the sun.  This is great for those who are sun sensitive such as those with lupus as well as anyone who is being conscious of the sun!!
 
I'd love to know if any of you would like to know more about my bracelet. It's really been a great thing with my little girl and knowing more about the sun! I'm working on my website and will have more info to follow.  I was always worried about my daughter and the sun, now I know a little more about how bad or mild it may be outside.
 
I don't want to sound like I'm a big marketer here - I'm just a mom looking out for my girl and hope that I can help others like me being aware of the sun!
 
 
 
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 5/30/2008 1:44 PM (GMT -7)   
jessieb578 said...

I'd love to know if any of you would like to know more about my bracelet. It's really been a great thing with my little girl and knowing more about the sun! I'm working on my website and will have more info to follow.


Thanks for telling us about your bracelet -- however, forum rules do not allow any kind of advertising, not even posting your website, here. If someone wants to contact you privately (ie not on the forum) from what you've already posted, that's great, but please don't say anything else about it here.

Thanks so much for understanding,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/30/2008 8:50 PM (GMT -7)   
Jessie,

Make sure you are still careful on overcast days. I've had some pretty big reactions on those does, even from inside the car. I still cover when in the car.

Also, the affects of the sun are cumulative. meaning you have to add up your given sun exposure over the last several days. I've also been affected by reflective rays . . . me sitting under an umbrella, but sun reflecting off water or sand and back up to me. Its tricky, but you'll figure it out.

I actually feel blessed that I have the rash warning. Some lupans do not have this warning and the damage is affecting organs w/o early symptoms.

Lynnwood's post is right . . . Glad you've found a potential tool.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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