Newly diagnosed and waiting for blood test results

[Nelly10]

Hello to everyone, I have recently been diagnosed with SLE (by a dermatologist) and I am waiting for blood tests and treatment. I live in Barcelona and today it is hot and sunny out there. The hottest day since my diagnosis and I feel like hiding away. I drove my daughter to school and it was so annoying because the sun was blazing and I actually felt as if my body temperature was going up way too fast. I came home, with a blinding headache and my arms are so hot and aching..... is this normal? I have a discoid rash on my chin, around top lip and nose, I use 100% Isdin which is easy to apply and doesn't leave any greasy residue or anything like that. My joints ache and as many others have stated I feel so tired all the time.... it is getting me down. It's nice to meet other fellow lupies and share experiences, so glad I found this forum. Well, again, hello to you all from Nelly...: )

[Paul_Howard Partner LUPUS UK]

Hi Nelly10 ,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for support and information.

It is very common for people with lupus to have symptoms triggered by exposure to sunlight and UV. In addition to sunscreen, you may want to consider other ways you can protect yourself, such as covering your skin and perhaps having a UV screen installed on your car windows. You can read more about light sensitivity in lupus and get tips for managing it in our blog article here - lupusuk.org.uk/coping-with-...

[shrop]

I too have extreme sun sensitivity. I live in the UK but spend my winter in Tenerife. (Bad move really) but the heat helps. I stay in deep shade and keep out if ultraviolet lughr bulbs. Im extremely lethargic. I have A 4 hour siesta ( just to lie and not sleep helps) which revives me for another few hours.

I was a golfer and keen gardener. Sadly I 've lost all my interests. Including landscape painting ( too bright outsude) you just have to adjust your whole life. It does work.!?!?!?! Good lucj

[Nelly10 in reply to shrop]

yes! I also escape the heat by just going to lie down..... I feel as if my life is on hold, I used to be outgoing and enjoy days sitting on terrazas but now I am like a vampire, scuttling along in the shade and going inside for a drink-----I miss this time of year, warm but not too hot, sitting chatting with friends on local terrazas..... sorry you aren't able to do your hobbies. I usually go to the gym but have been putting it off because people ask about the red scars on my face.

It's demoralising, I am an English teacher but have cancelled all classes due to my inability to face people while I am having flare up.