Sunbox anyone?

[cmclien]

Many of you mention that you cannot go outside, cannot be in the sun.  Why is this?  I have not seen this on any SJS symptoms, are those of you who cannot go out diagnosed with overlapping diseases like lupus?  I am wondering if I'm missing something in my reading.

Anyways, not being able to go outside can cause depression, or SAD (seasonal affective disorder).  Because of where we live, Illinois and before that, Seattle, my husband was sure I suffered from SAD every winter.  My "depression" came across as being very negative during the winter which is very unlike me.

Last year I thought what the heck and I bought a sunbox.  I put it on my desk in my den and sat in front of it for 20 minutes each morning while I ate my breakfast and did some reading. 

I have to tell you all it made a huge difference for me, I didn't suffer through the winter, yeah the cold freezing days stunk as they always do but I didn't feel in a mental fog for the whole winter, it was wonderful.  It doesn't provide vit D because there is no UV rays.  But it shuts down melatonin for the day and helps you wake up and regulate sleeping patterns. 

I am not sure though if those of you who get flares from the sun is from the UV light?  If so, this might give you your little bit of sun each day I guess you would have to research it but thought I'd mention it as it made such a difference for me last year and I will be starting it up again come mid to late october.
Cindi

[inga]

I do organic farming and am in the sun all spring, summer and into early fall....I am fine.  I don't even burn anymore.  Maybe I am the exception.  But I don't eat a special diet, I don't do any major things to sun shelter myself other than heavy clothing that is worn by any farmworker.  I am unaware of dangerous heat, due to anhidrosis and also, I have hypoglycemic unawareness, so I have to remind myself, but I hear the noon whistle and go in, or see the school bus go by and I know, it is time to go in.  This summer was very hot and I had to limit things, and drink, drink, drink, but, I ended up OK, just fine.  And my ANA is over the top....and I have neuropathy.  I did have to use more pain meds, but, that is not a big deal.

Lupus is the disease with sun sensitivity, but, I imagine every one is different....in my opinion, AI is AI, forget all the little names.

[inga]

BTW, I do have a sunbox I bought in the '90s from a Canadian company, and the bulb is still going....it is good....as far as how well it works, I don't know.  Winter is long and dark here and I get inconsistent on using it.  But, get this....you have to light a henhouse to get them to lay eggs in winter...so, perhaps there is more to it than we may think.  I would go for it.

[navydad]

I dont have a sunbox,,, but I;m ready to buy a sandbox,,,

[inga]

Play is therapeutic....just make sure it has a cover.....local cats could consider it a nice hangout.

[navydad]

Never thought about cats,, maybe i;ll just put it in the gameroom,, its empty now,,, and why in the world do they call it a gameroom,, must be something left over from teh 60;s when people actually played games as a family

[puccini914]

Well, I'm one of those that is extremely sun sensitive.  The last time I was in the sun for 20 minutes straight I ended up in the worst flare yet, but of course I was on Methotrexate at the same time, got exposed to Strep which took 7 weeks to recover from if I ever really did, and had to go to Miami in the middle of June for a mandatory family trip to see all the Grandparents.  So that was a situations where things got really compounded.  I am under doctor's orders to stay out of the sun as much as possible.  I am prone to really bad hives which have dissapeared since I went on Plaquenil.  I have no idea why I have a sun reaction, but I'm also light sensitive, especially flourscents, major migraine triggers.  Bright sunlight as well.  So I don't think a light box would be beneficial to me.  I'm trying to shield my eyes from all bright lights and glares as it is, so it's not just the UV thing.

[Gerty]

Yes I am sensitive to the sun I have Lupus and was told not to go out in the sun or if I do cover up long sleeves long pants hats and sunblock cream. Well fancy try wearing all that in the middle of summer and I cant use sunblock because Ive got be careful what I put on or touch with my skin I never knew what that was but now think its due to fibro with the hypersensitivity and my histamines just go crazy and also I think the lack of summer sun more so is prob why my lupus stayed in remission for such a long time I don't know for sure I just feel it might have had something to do with it

[Pegasus47]

I use to be in the sun all the time, especially summer.

Now if I go out in the Sun - i wear a hat, long sleeve shirt and if I am outdoors too long, I get a flare - develop spots on my legs, arms, purple with blister.  Not a sun burn.  Responds to steriod cream.  It takes several weeks to calm it down.  This has been happening now for 3 years.  No one knows why.  I just live with it and be careful. 

I happen to live in a place where there is a lot of sun  all year around. 

Pegasus

[gphx]

In early spring I thought it might be a good idea to catch up on vitamin D. I went to a tanning salon. Within a few hours I got stiff. For a few days after I could barely walk. Some people think only those with lupus need worry about the sun but Sjogren's is caused by the same genes as SLE and many are on a gradient somewhere in between. Wouldn't hurt for people to be aware and receptive to the possibility of sunlight related patterns in their lives.

[LizPetillo]

Sjogrens and sun do not mix.  Plaquinel and sun do not mix.  UV lights in office buildings and Sjogrens do not mix.  These are what the Sjogrens Foundation has put out for those of us with Sjogrens.  If you have it .. stay away from the sun and office lights that have UV.  They easily can trigger symptoms, and in the case of Plaquinel they can trigger hives.

Inga seems to be an exception to this.  Lucky duck. 

[Linda196]

I'm another exception I guess, sun no longer bothers me, although most of my life it did, with rashes, nausea, headache and various other reactions. Those seemed to stop when I started taking Plaquenil and Methotrexate...some "paradoxical" reactions are easier to live with than others!

[cmclien]

@grphx
I didn't know SJS and Lupus were caused by the same gene!
When my rheumy diagnosed me for SJS based on symptoms and low blood complements he said the blood tests that are low point towards lupus.  Everything that comes up when I google it points at lupus but I don't have a single lupus symptom and the sun doesn't bother me other then I sunburn very easily and now that I'm on plaquenil I can tell it will do that even more so.  I'm not a sun worshiper but I do like to go out for a walk.

FYI for those of you who cannot really tolerate the sun it only takes 15 minutes a day or less to get enough vitamin D from the sun.  Most people can get that much just running their daily errands etc.

I only mention the sunbox because its UV free yet has the full spectrum of color that the sun has.  I think I will call the company today that makes mine and ask them about its effects on sjogren's or lupus and medicines that make you sensitive to the sun.  I will be curious what they have to say.  It is a fluorescent bulb so if that is a trigger for some of you obviously that wouldn't be good!

I'm in no way trying to sell a product here, I only started this thread because it made such a postitive difference in my mood last winter and has had tons of research over the last 20 years.

[Kerrikins]

The SJS foundation lists many symptoms and issues that can arise but not every person with SJS has every problem. Also about a gazillion side effects and problems are associated with plaquenil but many people get few if any of them. I definitely have SJS and I'm also on plaquenil but being out in the sun doesn't have a big effect on me. All of us can't be put in 1 box just because we have the same disease. I think the sun box is at least worth a shot, if someone thinks it may help. Lack of light can affect so many things and the box doesn't emit burning rays at least.

[cmclien]

I called the sunbox co. and they told me it blocks 99.9% UV but clearly if you are one of the people who cannot tolerate ANY sunshine or even fluorescent lights then this product is definitely NOT for you.

It effects melatonin and seratonin levels in your brain and has been used for years and years to treat depression, seasonal and sometimes otherwise, bi-polar disease and sleep disorders as it effects the circadian rhythms.  I can tell you one thing, when I use it in the winter I sleep very well.  Come spring and summer I definitely have some insomnia issues!