Sun exposure

[Sammyb246]

Sorry i know i keep posting. New to sle lupus with hlh taking lots of meds. I know the sun can affect us. But I was only in the sun for an hour washing my car when in came in I had the shakes ( only lasted a couple minutes) a rash appeared on my chest ( I had a hoodie on) I felt drained and and just not right. Is this how you guys feel?

[Spanielmadlady]

Hi .yes. for me it's a bad headache, joints ache ,fatigue etc. hat,factory 50 and sunglasses all year round.even though you were covered sun on any skin will cause you to react anywhere. X

[Sammyb246 in reply to Spanielmadlady]

Thanks fir the reassurance. Its only 14 degrees here but sunny. Can't wait till summer. But I've learnt my lesson. 😓Suncream applied from now on. Xx

[Spanielmadlady in reply to Sammyb246]

It's not the temp it's the UV levels.even Uv levels through windows ,fluorescent lights and light bulbs can have an effect. Uv sends our immune systems into panic mode.Sorry to rain your parade but covering up head to toe ,staying out of the sun as much as possible, wide brimmed hat,sunglasses and nothing less then factor 50 are all a must do.if I don't it leads to a few days indoors feeling rough and stiff with a migraine 😕 xx

[NewEngland3 in reply to Spanielmadlady]

yup---and here in the US they are banning incandescent light bulbs..I bought so many....sunscreen does only so much....

[flo_IarFachYrHaf in reply to NewEngland3]

I've discovered (in UK) that although incandescent bulbs are now only available to businesses, that LED bulbs now come with a lot of information on brightness and warmth/cold so in terms of lumens generally no more than 400, which is 40w in incandescent, and 6w in LED, I can be under the next step up 700/60w/10w but needs to high inside a shade and not too long. On the kelvin scale no more than 2700k. I buy online from a company that give full information. We have complicated lighting system at home to cater for me and my parents!

[StriatedCaracara]

I get the shakes, sometimes the afternoon after being out earlier . Sometimes the next morning after a stressful day the day before. Have not seen it written about, but rheumy said it was part of the picture.

[Sammyb246]

Hi do any of you get sunscreen on prescription or buy a particular one that you know works

Thanks for advice xx

[Tykle in reply to Sammyb246]

I get Uvistat, but the best thing I have is a uv umbrella.

[pattypatchwork]

Hi, I wear factor 50 sunblock all year round, even if I am in the house when it is snowing. Flourscent lights also affect me so I have uva gloves for my hands. My hands blister badly if I don't

[Krazykat26 in reply to pattypatchwork]

Thank you for this ppw 🤗I didn't know UV gloves exist so I've checked them out and ordered a pair (or three😜) 💜🌈xx

[flo_IarFachYrHaf in reply to pattypatchwork]

lighting in supermarkets (and other places) can be difficult - all my clothes have long sleeves so they cover my hand.

[Lily77]

I use La Roche Posay Factor 50. It comes in lotion and sprays so easy to apply quickly and the bottles go a long way.

[Tiggywoos in reply to Lily77]

I love this stuff … it’s not cheap is it but it’s good enough to use as a moisturiser and boots often have it on 3 for 2 . Always got good use by dates too !

[Lily77 in reply to Tiggywoos]

Hi Tiggywoos, thank you for your reply. It is always lovely to get a reply. The beauty editors agree with you about using it as an everyday moisturiser. I noted that one of them wrote that this is what she did almost exclusively during lockdown. I also use the cleanser. Look Fantastic also regularly do La Roche Posay 20% off or three for two. With my best Lily.

[Tiggywoos in reply to Lily77]

ooh yes I forgot about the cleanser I use that too 😊.. it’s a nice pump dispenser so fingers don’t go into a pot ! It was actually a lovely Chinese Dr dermatologist that recommended it 3 years ago and she now works in the states (she had beautiful skin ) . Thank you for the look fantastic tip I forgot about that website 😀

[Riselikeaphoenix_123]

Hi , I have had terrible pain in my body especially my hips side and front and knees and shoulders for the last week. I feel it when I am sleeping and awake. I have been wearing factor 50+ and sun glasses and hat too! I am really tired too but not sure if it's only the sun and light or the surgery changed the brand of my Hydroxychloroquine from ZENTIVA which helps to Quinoric which didn't. I am back on the ZENTIVA. I was diagnosed in October but I have been suffering all my life 47 years of it. I hope that your symptoms improve. I haven't been prescribed pain medication so I take Nuramol. Any suggestions? Cx

[Cwmtaf]

I agree totally with Spanielmadlady. Even car journeys in bright sunlight leave me feeling drained mentally and physically. Can be a bit disheartening looking out during a lovely sunny day and knowing if I get carried away and spend too much time `out there` I will be `done` for the rest of the day. On the positive side it IS manageable just takes planning, protection and in my case really enjoying getting out and about in those cloudy rainy days. Good luck.

[NewEngland3 in reply to Cwmtaf]

Try to get UV tinting on your car, they can do see through UV tinting

[dg70]

Yes me too. Just got in from a 20 minute dog walk and massive migraine and neck rash. I had sunglasses and sunscreen on. Next time I'm digging out my sun hat. I also have a parasol which is helpful sometimes as you don't get the sweaty hair. Everything is such a faff but it does help with the flares which can go on for days when we don't take all precautions against the sun. Get a good outdoor uv parasol and also garden umbrella needs to be a good UV protection level if you want to sit in the warm outside. I've just invested in an all singing and dancing one but it cost a bomb but I really like to sit in the warm but know even in the shade you need that UV protection.

[Krazykat26]

The kind of lupus I have affects my skin and I have to cover up all year round. I can't tolerate sunscreen so I use sun protective clothing. I have long sleeved rash vest n rash leggings that I wear under my clothes. All the other suggestions I completely agree with so won't repeat it but I will add that I check out the weather every morning on the met office website. It tells u what the weather's gonna be like but at the bottom it's also the UV rate too. We're already going up to 4uv during the hours of 12-2pm so I can plan my day accordingly.Another helpful place to find out about photosensitivity is on the lupus UK website. If you scroll down to Eclipse you'll find out all about light sensitivity.

For me I get headache, feel nauseous, feel faint n often quite panicky. The joint pains come later n can last for days so it's definitely not worth the risk for me.

You will find your own level of tolerance or not by experimenting but it's generally advisable to not go out between 11am n 4pm when the UV is at its strongest. 💜🌈Xx

[NewEngland3 in reply to Krazykat26]

"For me I get headache, feel nauseous, feel faint n often quite panicky. The joint pains come later n can last for days so it's definitely not worth the risk for me."

Same!!! And I start feeling weak and like I have to eat. Since I am aware of this and not in the light I no longer suffer from binge eating disorder....

[StriatedCaracara in reply to NewEngland3]

Same here, I have to have something to eat..when better controlled I don't eat so much.

[flo_IarFachYrHaf in reply to Krazykat26]

Sorry to hear you too are very light sensitive - good to know that I am not the only one that feels panicky, when I had some extreme anxiety my GP said that it can be a symptom of lupus, which did help me deal with it better.

Unfortunately the met office UV forecast does not take into account the thinness of the ozone layer in early spring in UK. Someone from Met Office sent me some graphs showing it can be as high as in June, but it is a bit d=random - on the good side slowly improving!

[Sammyb246]

Thanks for all the advise guys xx

I think I need to start getting myself adjusted to a new way of living with lupus.

[NewEngland3 in reply to Sammyb246]

Good attitude will be the game changer--believe me....it has taken me 30 years to finally accept this and change my attitude.

[StriatedCaracara]

Your post prompted me to look for UV protective clothing on Amazon. Founds lots of things, with factor 50 etc in. Brimmed hats, arms that go under T-shirts..used by golfers, people fishing,

Was brilliant seeing so much there and also that some non lupies are also changing what they buy too.😊🤠😎

[NewEngland3 in reply to StriatedCaracara]

Best is to move North where it isnt as hot..I live in the MidAtlantic (US) and when you are above 80 for almost six months its really rough....cant wait for my kids to finish their school and Im out of here....together with my multiple boxes of now banned incandescent lightbulbs.

[flo_IarFachYrHaf in reply to NewEngland3]

I'll just copy a post I did in reply to someone else about light bulbs

I've discovered (in UK) that although incandescent bulbs are now only available to businesses, that LED bulbs now come with a lot of information on brightness and warmth/cold so in terms of lumens generally no more than 400, which is 40w in incandescent, and 6w in LED, I can be under the next step up 700/60w/10w but needs to high, inside a shade and not too long. On the kelvin scale no more than 2700k. I buy online from a company that give full information. We have complicated lighting system at home to cater for me and my parents!

[NewEngland3 in reply to flo_IarFachYrHaf]

thank you! so lumens determine UV ?

I am hoping that incadescents will still be allowed in US for fridge and so on..I have a big stash but scary new generations may not have this....

[flo_IarFachYrHaf in reply to NewEngland3]

No, lumens are brightness in general. “Lumens are a photometric unit measurements that convey how bright a light will appear”. Some lights have more UV than others regardless; older halogens, small or large are bad. Fluorescent tube lighting is not good, but again some have more UV than others. LEDs are better but if they are too blue/white they are not good for some photosensitive people. My parents use non flickering daylight tubes in the work room for making clothes, but I have to cover up in there, I think the UV is not so high in them, but the blue is. I definitely don't do well under any sort of blue/white daylight sort of bulb.

I think some people only react to UV - that's what I thought about me, but experience suggests it's light in general. So I keep lumens and kelvins low!

I knew a bit about some of this stuff because I studied photography and knew a bt about gallery/museum lighting, which has to be low UV, but tried to learn more, enough to have safe lighting for me! I go to Quaker meeting and the community centre changed the lighting, I just knew it wasn't right for me and they actually sent me the full details of lumens kelvins etc and it is not good, not way off the scale but enough to make me wear a baseball cap

[hootie26]

Joint aches and fatigue mostly for me. Sometimes I do get skin irritation and itch

[StriatedCaracara]

This is a brilliant post Sammyb

Just been through all the replies. Confirms horrid symptoms been getting either because of sun, stress or doing too much.

Lupus Foundation of America do a flare plan, on their website.

Going to note all this down on the document I printed off.

If things get given worse then get flesh burn feeling in legs, upper arms and front of abdomen, kidney pain, really bad headaches, sores in nose and mouth, dry eyes (due eye lash hair follicles getting blocked up with immune complex) like happens with other hair follicles in some rashes?.

I guess there can be small flares and big flares. I'm trying to work out my order of severity. Seems to start with shakes, feeling panicky hungry, faint, unsteady so guess for me, immune system attacks my nervous system first, then knock on effect somehow on joints and skin..

[flo_IarFachYrHaf]

Sorry to hear you had a probable reaction to light. If I have too much light it makes me tired, achy, a bit flu like in symptoms .

In spring, in UK, the ozone layer can be at its thinnest but very unpredictable, making things worse. The met office doesn't include possible thin ozone in it's UV forecast, but someone from Met Office sent me graphs that show in March/April it can be as high as June.

I am completely covered up in daylight hours, face included. I have a big umbrella that is dense fabric to protect from light but through most of he year/day I would still have a layer on underneath. I use a cotton designed for hats for clothing and face & head covering and uv protection "Buffs" i suspect there are other makes and bamboo clothing & hats. I wear wrap round workwear glasses that protect from UV and blue light. In summer I have full length dresses of the cotton fabric but also wear UV protection leggings (swimwear department!) underneath. I think that light in general not just UV general is a problem for me, so sunscreen is not adequate. I use it only for my finger tips.

If I stay absolutely covered up from sunrise to sunset (but it is nice to be uncovered some times in hour after sunrise and hour before sunset), everything is much better. In windy weather (or my arms are fed up with carrying umbrella) it's 2 layers over head and face (and body) and a dark version of the glasses. The first 6 months were awful, just staying indoors most of the time, but probably after I'd been on hydroxychloroquine for a bit, things improved to how they are now.

[MrsMarigold]

Hello Sammy. Not sure if I can add anything else significantly helpful. I will give you an image of me inside my house where all lighting is LED. I wear dark prescription sunglasses and mostly UV block clothing. I never wear sunscreen on my face unless it is mineral zinc combination in a powder base. My skin can not tolerate UV lotions. I sit in rooms with candle light at night/ my husband needs the lights. I find “Buffs” brand for covering my face when reading kindle essential. Sunlight is not good for lupus but either is heat and humidity. I live in the US in a very humid, swampy environment. The shakiness and rashes and general illness feelings along with migraine, joint pain, and unrelenting fatigue are frequent episodes if I ignore the heat and humidity of the day. Best, MrsMarigold

[NewEngland3 in reply to MrsMarigold]

Why dont you get some incadescents? Beg some UK biz for a bulb or two....the independent in me flares with all these governmental controls...

[MrsMarigold in reply to NewEngland3]

I agree. If it were not for my husband I’d probably walk around the house with a headlamp🤣 We actually have some incandescent lighting. When I remodeled A large part of our living space 10 years ago I remodeled with led. Didn’t know then what I know now. And didn’t have lupus diagnosis. Keep up the independence!