How do you deal with photosensitivity?

[flo_IarFachYrHaf]

I became very photosensitive in late December early January: grey days, tungsten & hallogen lights. Particular red shape on face with leg & backache. It has become less instant. I've been taking hydroxychloroquine since mid May. The heatwave was a disatster requiring antihistimes & short steroid course, skin not recovered yet. I cover my face [scraves and/or uv protection coolmax "Buffs"], long sleeves, trousers & wrapround anti mist UV protect glasses [affects my eyse too]. Heat & sun combination the worst.

[Paul_Howard Partner LUPUS UK]

If you haven't seen it already, you may want to take a look at our website for people with light sensitivity - eclipse.lupusuk.org.uk/

[flo_IarFachYrHaf in reply to Paul_Howard]

Thank you. that looks very useful, will peruse.

Sometimes I feel I am not as sensitive as I was {talking to someone in the meteorological world I can see that ozone thin Jan-March & might cause more problems] - less back ache and leg ache but really I'm altogether better if covered up. My parents make bridal wear & costume and have just found one of their suppliers sells a cotton UV protect fabric. And they are thinking of getting something for car windows

[flo_IarFachYrHaf in reply to Paul_Howard]

I had found this ncbi.nlm.nih.gov/pmc/articl... about artificial light sources.

I find the old fashioned incandescant light bulbs not shaded at close proximity cause problems over a period of about an hour. We have just dicovered that if you are a business you can still buy the old style bulbs from wholesalers.. Halogens are the pits.

And via met office contact hpa.org.uk/Topics/Radiation...

[LupusKaren]

I have acute photosensitivity and photophobia, which trigger what have been officially diagnosed as Cluster Headaches (like a migraine but a million times worse). Sunlight, UV (fluorescent strip lighting, nightmare), TV, PC, all trigger these migraines usually waking me from sleep. Currently have oxygen therapy to help, and about to start new medication Topiramate.

For me its simply a case of avoidance, I will do anything to avoid triggering one of these CH, I have got UV filters on both my TV and computer, but limit my time with each to no more than 1 hour 2 x day. I have my lounge totally UV friendly, blackout blinds, and UV reflectors on windows.

[flo_IarFachYrHaf in reply to LupusKaren]

thank you for your reply. It sometimes feels very odd to not be able to take much of something that we all take for granted and to not actually know anyone else in the same position.

I seem ok with the lap top. It;s not as crazy as in Jan-Mar. But once I get UVed it's hard to calm it down. Halogen lights are the pits - I think some of the tiny ones have uv filter cover but not all.

I have had migraines since I was about 8 and light, especially flourescent tube lighting will trigger them. Often having to remove my self from bright light - sun or artificial. When I was in my early 20s the migraines became all encompassing, not just on one side or other.. Also had mild photosensitivity for 10 years due to medication, so not entirely alien concept but this is much more.

My parents are getting some film to cover windows in car and some other windows in the house. About to embrak on making clothes with a UV protection fabric.

[margareth8537]

Best of luck on this. It can be a difficult one as people make the assumption that we all feel better when the sun's out. And if you get a rash on the face they comment on how healthy you look!

Over the years I've found that long sleeves and high collars are worth it, and I luckily like big floppy hats.

Still find it difficult to remember to be careful inside - I love sitting in the conservatory - but we have UV protection on the windows and roof.

Remember you do need to get some vitamin D, and that daylight can be good for you.

Best of luck

Margaret

[flo_IarFachYrHaf in reply to margareth8537]

Thank you for your reply. I have been taking vitamin D all year. We are going to cover the windows in the room that could loosely be termed a conservatory - no roof glass. Fortunately old welsh houses are quite dark.

I'm thinking I need cover up swimming clothes for hydro therapy - esp if I continue in my local pool as I think quite light in there.

I do really miss the air on my skin.

The trouble with big floppy hats - which I too like - is loss of peripheral vision, especially in tiwn, some of my scarf wrap ups do the same.

It is good to hear from other people, to feel like a problem shared.

[simon12]

All I've been given is light sensitive glasses

I also have floaters as well

[flo_IarFachYrHaf]

nbodiy has given me anything! I've bought work wear glasses - uv protection and anti mist becvause when upper and lower face covered as well ordinary glasses steam up. Ashaded pair nd a clear pair. If face is covered completely I wear the clear ones as I feel that it is difficult to communicate with people.

I've had uv filter added to reading glasses - annoyed that they are not free on NHS - tints for people who have trouble with brightness can get them free.

I now have uv protection cotton blouses that my Ma made and scarf for head - with uv protection buff to cover lower face. Also for warmer weather a long dress of the fabric.

get up for face flickr.com/gp/incrediblehow...

[cathie]

This might be blindingly obvious but avoid any skin creams etc with perfume in. Dermol for instance is good. I found this out after being referred to nhs ninewells in Dundee which has a special unit on photosensitivity.

[madmagz]

Hi I am photosensitive and have been for quite a long time so it does not worry me now as it has become a way of life. I know what you mean about the heat wave as it means I spend a lot of time having a personal sauna when I am going out dressed in all that I wear but it keeps me healthy so I put up with it. I have found that wearing one thick layer is better at blocking UV and is cooler than wearing lots of thin layers, I do not take antihisamines due to allergies I do however cover my head, wear gloves, and a factor fifty sun cream on all exposed skin. I tend to stay in during the day and go out later once it has cooled down a bit as I can do most things online. I do not cover my face with fabric as a factor 50 will surfice provided it is reapplied regularly, I have glasses with 100% UV protection the heat and sun together are a pig yes so stay indoors when they are at their worst with air con and go out when it is cooler, if you can't do anything about them change what you do instead shops are open a lot longer now so it's not as if you can't do any shopping and generally it is easy to manage life now without having to go out between 10.30 am and 4.00 pm so it is getting cooler by then I even go out just at night if it is a really bad heat wave and get nicknamed "Vampire" and just laugh about it then live up to my name when it comes to Halloween and go to the fancy dress party dressed as one.

As you become more used to it you will learn coping mechanisms I have been like it a good few years and got used to it and learnt to cope,

Good luck and keep your chin up

Madmagz x

[flo_IarFachYrHaf]

I'm pretty sorted these days. It's still not a bundle of laughs! I have a micro wardrobe of cotton uv protection clothes designed to cover and keep me cool - designed and made by Ma, Pa and me! UV protection buffs, workwear glasses in clear [because when face covered really not good to be wearing dark glasses so frowny lines getting deeper! Also cotton triangle scarfs to tie on head - or even over lower face if hot. Whopper umbrella dn smaller one. Wardrobe in lilac and indigo - two sleeveless loose to the ground frocks, an A line to the ground skirt, two white high to collarbone neckline vests [to wear under shirts if hot and need air] and two shirts with long cuffs and high neck. I have to wear trainers as feet hurt but have one pair of sandals that reveal little of my foot and have padded foot bed. I wear the shirts in winter in unknown situations.

I am the bandit!

I am learning how much light is too much how much is ok. I have concerns that certain light in general affects me. Like this new computer screen...

BUT I've been to Menorca twice in October - the UV is less than in UK in April to July. The think ozone makes UV an issue in the spring. Met office connections gave me extra information.

[flo_IarFachYrHaf]

some of my cover ups flickr.com/gp/incrediblehow...

[katidid]

lots of scarves and hats for outside! my rash also gets much worse with light exposure (and stress), so I did a trial of different types of sun products and different ways to apply them.

What seems to work best is two layers on the face and neck. First I put on Ren Sensitive Skin lotion, then the first layer of sunscreen (Dermalogica's Sensitive Tinted), wait for that to absorb and then I pat on another layer of MD Solar Sciences Tinted Balm. I use these new "stick" sunscreens for my chest and MD Solar Science sprays all over my body for under my clothes.

No lie, my rash and skin sensitivity has improved 1000%. It took awhile to figure out, but light layers and this skin care combo works like a charm. I can take a 30+ min walk in full daylight now and not get ill. That's a first in over 2 years!

Most of this stuff you can buy either through Amazon or beauty stores like Sephora.

Good luck!