Anyone else finding the recent sunny and warm wea... - LUPUS UK

LUPUS UK

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Anyone else finding the recent sunny and warm weather effecting their aches and pains even if every precaution is taken against?

eejit profile image
16 Replies

I have put the factor 50 on sun hat, long sleeves and covered up, also was in the shade, however it wiped me out! Joints especially my feet and hands doubled in size, whopping headache and lovely rashes! Has anyone any tips to help, I know the weather never holds for too long but I don't want to be the odd one out.

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eejit profile image
eejit
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16 Replies
saranne profile image
saranne

Yes! Yes! Yes! I have now realised it must be the sun. I always found it hard to believe and was once told not to worry about it, I always wore screen but with low vit D I did go in the sun. But this time of year is always bad, well from easter onwards. I just spent days off work laying on sofa,swollen pain etc... no sun. Then yesterday woke up feeling very different. so could be the resting but also could be the absence of sun.

Feeling anxious about appt. the morning, I thought I needed more than steroid to control things, but now not so sure. I still have joint pains but the fog and swelling and exhaustion has gone.

Must get ready to go now,

Why and how does the sun do this to us??

Purpletop profile image
Purpletop in reply to saranne

The uv rays gets the immune system up in arms for some yet unknown reason. Sun and anything man made radiating uv (bulbs, PCs). The degree of impact on the immune system differs from person to person, some get as bad as you, others have no issue.

Danielle2419 profile image
Danielle2419

Yeah I do get this also no matter how much I would cover up or even if we wear spf 50 I cant say why this happens at all though but I now try to avoid the sun at all costs if not I will proceed in the shade rather than the sun. Good luck in finding a solution.

caninecrazy profile image
caninecrazy

me too! the short burst of sunshine we had last week has wiped me out,i always wear sf50+ and long trousers,long sleeves etc and avoid midday sun if I can. I walk my dogs early morning and late evening so sun rays nt as strong and walk a shady route but since Monday my body feels like lead! me not a happy bunny :( x

eejit profile image
eejit

Wow I didn't know so many of us had this problem I think a few experiments are needed an Internet trawl and lots of questions next consultant visit! I already looked like a pint of milk so no doubt I will remain so to prevent pain, if I can find anything I will keep you all posted! We suffer enough with this we need some fun in the sun too???

tiredmum profile image
tiredmum

Morning - me too!!!!!

I have found even sitting in the front of the car with factor 50 on and fully clothed makes me ill after about 10 mins!

I go out early morning and evenings, sit in the back of the car which has tinted windows and stay indoors for the rest of the time.

I know it's a pain but so much better than feeling nauseous, having a face like a belisha beacon, painful swollen joints, short of breath and feeling like I am going to collapse in heap any second.

madmagz profile image
madmagz

Hi I thought that I had to answer you I am extremely photosensitive and have to take caution just in daylight hours whether the sun is out or not, I wear long sleeves, trousers, scarf, gloves, cover my head and use a factor fifty suncream. I stay indoors when the sun is at it's strongest and am extremely careful even indoors. I have removed all low energy light bulbs and flourescent bulbs as they emit U.V. rays and have the same effect as the sun and make me worse. This was on the advice of my dermatologist as I had large sores on my neck ear and shoulder - she asked if I had a low energy bulb in a reading light and it turned out that had caused it as that light was just behind me at the side when I was sitting reading.

It is possible to get fabric or clothing on the internet that is thinner but has a high protection factor so we don't roast if the sun is out, you might find it worth looking at

Madmagz x

eejit profile image
eejit in reply to madmagz

Poor you please be careful and look after yourself x

Looby profile image
Looby in reply to madmagz

Can you give us the Website for this? Thanks

madmagz profile image
madmagz in reply to Looby

Looby some clothing is available on amazon other websites to look at are sungrubbies.com sunprecautions.com and solartex.com Unfortunately these companies do charge rather a lot for the clothing but I suppose they have to use special fabrics and chemicals to coat them with. Another thing worth mentioning is that one of the widely available treatments for washing net curtains puts a sun protection factor on them, I think it is Glo white or something like that when I see the person that told me about it I will ask her. I did not make a not of the name as I am not a huge fan of net curtains but will try to get the name of it for those of you who are.

I would please like to say to all of you others who are avoiding the sun, please ensure that you are getting vitamin D by some other means as it is vital for absorbtion of calcium and knowing that lots of us are on steroids which can reduce bone density it is worth making sure this is catered for.

Thanks eejit :-) I will.

Good luck everyone and keep your chin up. :-)

Madmagz x

Looby profile image
Looby in reply to madmagz

Thanks for that, Madmagz xx

MaximumRide profile image
MaximumRide

I am like managed, I am extremely photo sensitive and have had to put filters on my Windows,wear factor 50 Sun cream and I wear a wig because I get burned on my head and I can't put cream on my head. I cannot go in the sun without getting sick so this recent spout of good weather is a killer. I dint sleep, I'm in pain all the time and I have a fever. The worst thing is that I have done everything I can to help myself and I still suffer.

eejit profile image
eejit in reply to MaximumRide

My goodness that's awful I like you get my scalp sunburnt so I wear a hat but what you are going through is rotten take care x

Looby profile image
Looby in reply to MaximumRide

Sympathy +++ Hope the rain continues......

brave profile image
brave

I hear you all ........why why why I ask ,sun is poision to me ,but so is depression and darkness so I still go out and pay the price ,it makes me so unwell ;((

caninecrazy profile image
caninecrazy

dear brave, I too have depression, I do put my feet in the sun if im relaxing outside and the rest of me is in the shade so at least a bit of me gets warmed by the sun and maybe a little vit d!! lol. ......funny though as last November I had a dodgey mole removed off my foot and caught it just in last stage of changing into cancer :) but was advised to cover up in future! I had to smile as I avoid the sunshine at all costs! lol x

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