Coping with Skin Photosensitivity and Heat Intolerance With Lupus

Before I developed lupus, I used to love being in the sun and getting a tan. It does make me cringe when I look back and remember how I would often apply oil with no sun protection factor and then proceed to "bake" in the heat of the sun.

I would sometimes go on sun beds as well and I started to notice how unwell I would feel immediately after using them. I remember noticing there seemed to be a pattern of feeling exhausted afterwards which I'd never had before. I couldn’t work it out at the time but unbeknownst to me I had lupus and my symptoms were getting worse at this point. Having lupus makes us photosensitive to UV (ultraviolet rays) from the sun, also from some indoor lighting and sun beds and if we are exposed it can cause flare-ups to happen.

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Sun-sensitive lupus flare signs

My classic signs that I’m flaring after being exposed to sunlight are:

  • Red rash appearing on chest and arms
  • Exhaustion
  • Muscle and joint pain/aches
  • Tingling in hands and feet
  • Butterfly rash on face
  • Rapid heartbeat
  • Nausea
  • Itchy skin

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These symptoms will vary from person to person. I am extremely sensitive to these UV rays and it has become one of my main flare-up triggers. I only need to be exposed for 5-10 minutes and I start to feel it. I have now become an autumn-winter lover because I tend to feel physically worse in the summer months.

I live in England and we are now in our summertime and I can feel my body struggling to cope. I’ve also become incredibly sensitive to heat, it just makes me feel so much worse.

Sun sensitivity tips

There are measures that we can take to protect ourselves from the heat and UV rays.

  • Wear a good quality sunblock, factor 50 plus (even in the shade)
  • Wear a sun hat
  • Keep cool by having frequent showers
  • Avoid being out in the sun between 11am-2 pm
  • Stay hydrated
  • Wear loose clothing such as long skirts and trousers.
  • Wear sunglasses that provide UVA/UVB protection
  • Place feet in a bowl of cool water

Why do we have photosensitivity with lupus?

I’ve known for years that the sun was now my enemy although I’d never thought too much about why this was the case until one day I decided to ask my rheumatologist. He told me that when the skin cells of a lupus patient are exposed to UV rays pre-programmed cell death occurs more frequently in the skin than in people that don’t have the disease thus dead skin cells are not cleared from the body properly. These cells then come into contact with the immune system causing an autoimmune immune response.

Last summer, a lady collapsed on our local beach and an ambulance was called. I was told she suffered from lupus and was sunbathing. This caused her to become very unwell warranting medical help. I often remind myself of this and how important it is for us lupus warriors to stay safe in the summer months and protect ourselves from these harmful UV rays.

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