Sun sensitivity and being outside

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SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 6/27/2014 3:04 PM (GMT -6)   
I am going to be helping out at my kids' band camp in a few weeks, and I need to get things together for being outside. I did try (not very well) last year to prepare myself for it, but I still did not bring everything appropriate.

I know I need sunscreen and a hat. I have been told long sleeved shirts, but not only am I sun sensitive, but I have very little tolerance to heat as well. I am afraid that I will overheat if I dress in jeans and a long sleeve shirt. I will be outside for periods of about 2 1/2 hours at a time, twice a day, probably between 9 and 11:30 and again between 6 and 8:30. There is shade, and the parents usually sit there, but I will be filling water cups and walking to and from the field (I could take the golf caddy if I am lucky smilewinkgrin )

What does everyone here who is sun sensitive do when being outside is necessary?
Frequent lurker, Part time poster.

Known Problems: Sjögren's, Hypermobility, UCTD, Arthritis, Hypothyroid, Migraines, Eye Problems, Skin Issues, Depression, PTSD, Anxiety, Autism (high functioning), and Gastric Bypass Surgery (affects what medicines I can take and for how long).

Suspected: Psoriatric Arthritis, Lupus, Fibromyalgia, Epilepsy, Endolymphatic Hydrops, and whatever they decide next

Talldoode
New Member


Date Joined Jun 2014
Total Posts : 16
   Posted 6/27/2014 9:02 PM (GMT -6)   
This is a tough one. I referee soccer and am out in the sun for a few hours on Saturday mornings in Vegas. I try to be done by noon. I am not sure if I am sun sensitive or not. I went two years after diagnosis of lupus without covering up. I never had any pain, nausea, fatigue etc. from the sun exposure but I got a sunburn at the beach in Cali and three months later I was urinating every 2 hours and three months after that I was diagnosed with lupus nephritis. I dont know if there was a connection or not. But after that, I am like a vampire for the most part :-). Not willing to take a chance.

What I do for the sun when I referee - I sunscreen first. Whole body. SPF 50. Then I wear a long sleeve shirt. The referee shirt I wear isnt SPF rated which is why I sunscreen first. Normally I wear Coolibar long sleeve SPF 50 shirts but they dont make a referee shirt. The Coolibar shirts are nice but honestly, they cook you.

I wear a big brimmed hat too. Looks silly but it is what it is. One of my hats has the neck protector thing that hangs down.

I wear long pants but not jeans. I wear runners "wind pants". They are comfortable without being too hot. But they are not SPF rated either which is why I sunscreen under them.

After that - it is about being in the shade when I can be and drinking a lot of water. I also use one of those towel things that you can get wet and wrap around your neck. Not sure if you have seen them on TV or not. They really help keep me cool. You "snap" them to restart the cooling. I have about five of them. Love them.

One of my issues is I am 6'7" (thus "Talldoode"). So they dont really make SPF clothing for me.

Finally, I know that after being in the sun for a few hours I may be tired. I think a lot of that is just heat exhaustion since I am not used to the heat anymore. So I dont plan anything for after my referee stint. I go home and rest if needed.

So that is what I do. Hope it helps. I wish there was a test for sun sensitivity. Not everyone with lupus is sun sensitive. But it would be nice if there was a way to know for sure if we were. I miss the sun. It sucks. That is what I hate the most about lupus - it has taken everything I loved to do away from me. Golf, flying R/C helicopters and planes, playing in the pool with my kids, gardening, vacations at the beach. It simply isn't the same when you have to dress like a mummy to go in the sun.

Good luck and have a great time! We still have to live our lives as much as possible.

Cheers,

/Tall

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/27/2014 9:33 PM (GMT -6)   
I wear the coolibar clothes that are made for hot weather. They have a very nice jacket with hood made of a light breezy fabric called "aire".

When we have yard sales I wear my coolibar swim tights, beach coverup, and a large brim hat. I also sit under a beach umbrella.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jenny13
New Member


Date Joined Jun 2014
Total Posts : 6
   Posted 6/28/2014 6:40 AM (GMT -6)   
Hello,

I'm sorry to hear about your sun issue. I have similar sun sensitivity & LOVE the outdoors ... bad combination :)

I always use the following to help:
Sunscreen SPF50 (I buy the kids stuff because I can't tolerate fragrances)
Wide brimmed hat
Long sleeve white blouse - I wear a thin tank top underneath & leave the blouse open so my skin is covered but I get a nice breeze to keep cool
Light colored capris or long pants that are linen or gauze material - much cooler than denim
I always were socks & tennis shoes - with sandals I always get burnt on my feet

Another note ... Walmart now carries 'active' shirts ... they are moisture wicking fabric that come in long sleeves. I love these! I'm covered & keep cool. They are not very attractive, but I'd rather be safe & healthy.

I hope this helps ... good luck!

tenXmom
Regular Member


Date Joined Jan 2013
Total Posts : 62
   Posted 6/29/2014 8:10 PM (GMT -6)   
I can't remember the name but a friend of mine has vests that hold "ice packs" that she wears to her sons' football games in Texas, she swears by them, even if they're not attractive ;)
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA & Osteoarthritis - Reynaud's - Fibro - AIED - TMJ - Sjogren's - and whatever is going on with the gallbladder...

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 6/30/2014 5:02 PM (GMT -6)   
Does anyone know where I can get some SPF clothing either used or at a decent price? My budget is really tight, but I was outside (just for 1/2 hr) on Friday, and I was wandering a field yesterday looking for a cat (probably 20 minutes, but I tried to dress appropriately). The rash on my arm has really blown up and is spreading. My drs nurse flat out told me it was a reaction to the sun and I was to stay out of it, unless I had this clothing. This is so not fun.

RE: Sun sensitivity... in the past, it would make me very tired and feel nauseous. Sometimes it was related to the heat, and others to the sun. Sometimes I would get a little itchy, but nothing like what is happening. Lately, I have also been getting migraines from the sunlight, and rashes in spots that do not even hit sunlight. (my sides and back, but they are more of itchy than rashy). I have always stayed in the house, for the most part, but now I feel trapped. :(
Frequent lurker, Part time poster.

Known Problems: Sjögren's, Hypermobility, UCTD, Arthritis, Hypothyroid, Migraines, Eye Problems, Skin Issues, Depression, PTSD, Anxiety, Autism (high functioning), and Gastric Bypass Surgery (affects what medicines I can take and for how long).

Suspected: Psoriatric Arthritis, Lupus, Fibromyalgia, Epilepsy, Endolymphatic Hydrops, and whatever they decide next

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/30/2014 7:11 PM (GMT -6)   
Look for clothing made by Columbia Brand. They have sun protective clothing.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 6/30/2014 9:31 PM (GMT -6)   
I will do that (A few people have been making suggestions, but I have not told them exactly why. I think they think I am just being sun conscious).

One of the sites was from a company called sunguard. It is a wash in product that gives your clothes an spf protection of 30. I hear a lot of people saying that they try to get spf 50. Would 30 be enough?
Frequent lurker, Part time poster.

Known Problems: Sjögren's, Hypermobility, UCTD, Arthritis, Hypothyroid, Migraines, Eye Problems, Skin Issues, Depression, PTSD, Anxiety, Autism (high functioning), and Gastric Bypass Surgery (affects what medicines I can take and for how long).

Suspected: Psoriatric Arthritis, Lupus, Fibromyalgia, Epilepsy, Endolymphatic Hydrops, and whatever they decide next

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/30/2014 10:04 PM (GMT -6)   
I'm not sure. I'm always aimming higher. Columbia clothing and coolibar are spf 50.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 7/5/2014 5:06 PM (GMT -6)   
Well, day two with spf on. On Thursday, I had no choice but to get some sun (no protection yet). My car had a few issues, and I had to get out to take care of it. The rash spread and really itched and hurt (probably because I scratched it a few times without thinking). It is on both arms now, but the right is by far worse as far as inflammation and redness goes. Yesterday I covered myself with (spf 50) sun screen. I had a slight bit of itching after walking around, but nothing like the day before. Today (we had a festival my kids wanted to go to downtown), I covered myself again and this time also wore long sleeves and a larger hat. They are not SPF clothes, but I thought it was better than direct exposure. Still the rash, but it is not any worse.

How long does the rash last as long as you are avoiding sun? I will be honest. I don't like this. I like my tee shirts, and I hate wearing hats. :(
Frequent lurker, Part time poster.

Known Problems: Sjögren's, Hypermobility, UCTD, Arthritis, Hypothyroid, Migraines, Eye Problems, Skin Issues, Depression, PTSD, Anxiety, Autism (high functioning), and Gastric Bypass Surgery (affects what medicines I can take and for how long).

Suspected: Psoriatric Arthritis, Lupus, Fibromyalgia, Epilepsy, Endolymphatic Hydrops, and whatever they decide next

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/5/2014 9:03 PM (GMT -6)   
Mine usually lasts a day or two providing I don't expose again right away.
Sunscreen allows you an extra amount of time beyond your normal okay time. Since we can't stay out very long they don't give us a long time protection.

I hate the extra covers too, but it's better than feeling bad because of too much sun. I try to do most of my outside stuff after sundown.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 7/5/2014 9:22 PM (GMT -6)   
The red rash and the itching aren't the main sun sensitivity problem -- that's just the surface inflammation. The bigger issue is inside the body where a good deal of invisible inflammation can occur -- sometimes 2 hours of sun can wipe me of all my energy for several days. Generally it takes 2-3 days for my sun rash to disappear, and the fatigue sets in on day 2 and can last as long as 5 days. That's why I *never* do back-to-back sun days...probably knock me out for a week.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/5/2014 10:40 PM (GMT -6)   
PS....don't forget halogen lights are big emmitors of UV rays. A halogen worklight my father uses on my car will knock me for a loop immediately and make me I'll for days.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 7/6/2014 7:31 AM (GMT -6)   
The rashes I get from the sun will last for weeks. It starts with itchy blisters under my skin which within a week will sort of erupt and then it turns into an eczema patch, or at least it looks that way. If I spend too much time in the sun I'm like Lynnwood, it will knock me right out.

We were on vacation this past week and I over did it on the sun the first day. When it hit me I fell asleep for hours and it's like a coma, nothing will wake me up. I freaked out the family a bit when that happened. Then I was so stiff , sore and feverish that I made sure I was shade bound for the rest of my cottage days.

I have always been like that and never knew it was attributed to lupus.

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 7/6/2014 8:53 AM (GMT -6)   
Lynnwood said...
The red rash and the itching aren't the main sun sensitivity problem -- that's just the surface inflammation. The bigger issue is inside the body where a good deal of invisible inflammation can occur -- sometimes 2 hours of sun can wipe me of all my energy for several days


That would explain why I just crashed yesterday. I was able to do it myself, but I almost had the kids make dinner for everyone (they are older), but I made myself do it. I was also I was going to take the kids to see fireworks, but I was so exhausted, I would hardly keep myself awake. We did not go (they already went with their dad, so it was more for me than for them anyway). Sun has always made me nauseous and tired. It also gives me migraines if I do not wear eye protection. It has only been recently that I have had a rash that I can directly attribute to sun exposure.

Most of my focus over the past couple years has been neurological and connective tissue (hypermobility) and sun exposure has taken a back burner. My Rheumy's nurse assumes that I know what to do and that I know the signs. I am starting to see that just like hypermobility is not only about loose joints, sun sensitivity is more than just a rash.
Frequent lurker, Part time poster.

Known Problems: Sjögren's, Hypermobility, UCTD, Arthritis, Hypothyroid, Migraines, Eye Problems, Skin Issues, Depression, PTSD, Anxiety, Autism (high functioning), and Gastric Bypass Surgery (affects what medicines I can take and for how long).

Suspected: Psoriatric Arthritis, Lupus, Fibromyalgia, Epilepsy, Endolymphatic Hydrops, and whatever they decide next

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 7/6/2014 2:43 PM (GMT -6)   
There are a lot of makers of protective clothing.....Columbia, LLBean, and almost every outdoor/technical/fishing/surfing clothing line. Search for it on Amazon...ie, shirts, womens, long sleeve, spf and you will find lots of different types and brands. I never had a sun problem until a couple of years ago and just bought shirts from LLBean. Only get a rash/bumps/itch on my forearms and like to spend a lot of time outdoors. It lasts about 2 weeks and I get it even with Neutrogena or Aveeno spf 55 or greater. Rats.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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