UV/Sunlight -

Hi everyone,

Only recently did a dermatologist suggest I was starting to become sensitive to sun/UV. Can I ask has anyone else this -

Painful red lumps on toes and what feels like chilblains on feet even when in 30 degree heat? Painful to point couldn’t put shoes on, and if I knocked toe the pain was I believable/brought tears to eyes

Bleeding patches into skin on sides of feet under skin?

Sun/UV started to immediately give skin sensation of burning into burnt skin even though I hadn’t been in sun = and then red blotches

Scalp red lumps on head get itchy and worse

I never know if I’m over worrying and wrongly linking everything to autoimmune

Also I’ve now started to get this off thing, that if I sit down on floor like leaning on hand do side sitting I’ve started getting bleeding into skin from pressure points! It’s just crazy

[DJK99]

Hi again - yes I had this issue twice now. On holiday - I had the most awful blistering/chilblain type condition - incredibly itchy too. Bright red, with water trapped under the skin in spots and larger areas.. This was way pre SLE diagnosis. As ever I didn't go the GP until I couldn't take it any more - I was brought up to withstand any pain and not go to the GP (father was a mad Christian Scientist so you er, ignored things away!). I didn't see the GP as was too late on a Friday eve but she suggested taking heavy antihistamine, and Derma something which is a topical antihistamine. Went to Boots and got some. I seem to remember it not helping a huge amount.. I just put up with it by wearing flip flops and Birkenstock type shoes for a long time. I was scarred for quite some time. Can send you picks if you like but his was post the childblain type things having receded. It was agony so I'm so sorry to hear you are going through it. I think it happened by me wearing factor 50 on feet, the putting my boat shoes on then taking them off and the cream had come off and forgetting to reapply. This was out in the sea on a boat and the sun was extremely strong - and so hot I had to take my shoes off. I thought I was allergic to the shoes. Had red blotches the other week on my head to so now I also apply factor 50 on my parting or wear a hat if going to be out in the sun for a while... sounds like you need to do the same. Btw, I did find I had terrible rashes allover when I got a new washing machine some years ago. They don't rinse properly any more so I was wearing detergent, using towels covered in it etc. I thought I'd become allergic to milk or something! Thankfully the washing machine died quite early on and the repair man mentioned they don't use much water any more so a lot of people/kids have issues with skin rashes... he suggested putting on an extra rinse and adding water to the machine via the detergent drawer and keep doing this until the next rinse shows clear water swishing around the clothes. Worked a treat. Hope some of that was useful. Hope you find a remedy soon - sounds quite serious the bleeding part.. hope your GP making all the right referrals. All the best, D

[BillScotland in reply to DJK99]

I noticed my washing machine was not rinsing so use less detergent and use the kettle to add water.

I wear a bush hat or baseball cap, sun glasses always for the UV and wear long sleeves. I still use 50 factor sunscreen tho.

I have a hirbawi the wife got me and it's great for keeping the sun oiff my neck.

[Hidden]

Hi DJK99,

That’s what my feet was like! When I told my rheumy and showed him pictures he didn’t really seem that interest and gave the impression it wasn’t anything or linked! My scalp is the itchy part where I have raised lumps, my toes would feel freezing cold re sensation even though in 30 degree heat, which is such an odd sensation, that said I also get goose bumps even when it’s hot. I’m going to try putting high factor on, my rheumy has made me feel as if everything I have been going through and taken pictures of was nothing I’m so annoyed x

[DJK99 in reply to Hidden]

That's not great I know... I went through the same. Just have to makes sure you do a Head to Toe on yourself - everything from physical to mental (ie any confusion, brain fog, irritability, low mood?) and take every picture you can think of whenever anything new turns up. Take it with you to your appointments and make sure they keep it on file. I posted it to him and cc'd my GP! You might have Raynauds - I have that pretty bad (hands and feet) since a child but it got extremely bad in the last 5 years - until I agreed to take medication! I put this off for years and years - probably due to the fear of meds my father put into me as a child - now on Nifedipine and it's fantastic! Well - Factor 50 is the only thing that has allowed me to go out in the past couple of months in this weather... how wonderful is it to have some cooler temps and rain?!! Make sure you use fragrance Free ones - the stuff for children maybe. Hope it'll all get better.. oh and limit sugar... just heats up the blood I find.. or inflames anyway. All the best, D

[Flyhook in reply to Hidden]

Try going to dermatology they should be able to help will still be nightmare but a little less of a nightmare.

[Lupusnoway]

I have the rash. Mostly on my arms, shoulders, hands and chest. After 1.5 years of this, my GP put me on an antihistamine (which did no good). I finally asked to be referred to dermatologist. It was then I was diagnosed with systemic lupus and referred to a another specialist. The dermatologist prescribed Floucimide ointment. It works like a charm. No more rash! I use it as needed, but no more than twice per day. You should try it.

[Hidden in reply to Lupusnoway]

Oh wow, I wonder if I ask for it dermatologist will give it to me! Thanks so much xx

[marghay13]

I had this searing burning feeling especially on my right lower arm. Didn’t matter if I used SPF 50 5star etc. At the time we weren’t very up on sunproof clothing either and I got some spf ‘sleeves’ from a US company. They were great and did the job particularly when driving so I always kept some in the car in case I got caught out. Easier now there’s more clothing choice. Good luck with getting sorted. I’ve always thought it was just another SLE thing. I did have a biopsy but it was inconclusive.