Lupus Is Going Down

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lupus sun sensitivity

Does your lupus sun sensitivity ever make you feel like a vampire? Has the sun become your mortal enemy?

At times, that’s how I feel. Like, even the thought of being out in the sun makes me want to burst into flames. And, it’s such a shame.

I used to love the sun. Really, I practically grew up outside. Then, one day being in the sun made me sick. And, cue the depression because I thought I had to give up my favorite pastimes.

And, once I was diagnosed with lupus (yes, I’m a man with lupus). I finally understood why. Plus, I learned how to remove that vampire-like feeling.

Here’s what I learned.

Disclaimer: I am not a doctor. I’m an individual that suffers from lupus. All content found on lupusisgoingdown.com, including text, images, audio, or other formats, were created for informational purposes only. The Content is not intended or implied to be a substitute for professional medical or mental health advice, diagnosis, or treatment.

The Photosensitivity Problem

It’s those pesky UV rays- UVA and UVB, to be exact. Ultraviolet rays from the sun damage your cells. Normally, your body has a process for getting rid of damaged cells.
uv rays and lupus

It’s called apoptosis. Basically, it’s the body’s way of killing off damaged cells and removing them from the body. In fact, it’s often referred to as programmed cell death.

In most people, it follows a typical pattern. But, not for people with lupus.

No, our bodies act differently. Instead of the cellular cleanup, our damaged cells hang around. And, this sends our immune system into hyper drive.

The result- a lupus flare.

Now, I’m not a doctor or a scientist. This is just from what I learned from my own studies into my disease. You see, I’ve always had a problem with the standard “not much is known about lupus” answer. So, I’ve read up on the studies being conducted and papers being writing on lupus.

Does that make me an expert? No. That makes me a lupus patient. Even better, it makes me an informed lupus warrior.

Of course, this positive outlook didn’t come immediately. Initially, after being diagnosed, I went through a severe bout of depression. My world had been turned upside down.

I mean, I had to give up the life I had known, or so I thought. No more going to the beach, the lake, or the river. I live by so much water, and I thought I had to give it all up.

Like I said, I felt like a vampire- avoid the sun at all costs. Or, suffer the consequences.

The Effects of UV Rays on Lupus

And, what were those consequences?

Here are some things that lupus photosensitivity can cause:butterfly rash

  • skin rashes or lesions
  • itching and burning sensation of the skin
  • fatigue
  • weakness
  • fever
  • joint pain
  • headaches
  • organ damage in severe cases

Basically, sun exposure can trigger a lupus flare. Indeed, it can increase disease activity with lupus.

Does this happen to everyone with lupus? No, lupus sun sensitivity effects about 2/3 of everyone with lupus. And, it effects everyone differently.

For example, some people experience a triggering of the butterfly rash. While others, get rashes on other parts of their body.

Going in another direction, some get headaches, while others don’t. Likewise, some feel so drained after being in the sun, while some hurt so bad.

So, how do you know if you suffer from photosensitivity? If you experience any of these symptoms after sun exposure, see your doctor. Clinical examination and your patient history are the only way to determine if you are among the number of lupus patients with photosensitivity.

As with other symptoms of lupus, it’s the pattern that doctor looks for.

My Experience with Lupus Sun Sensitivity

Like I said earlier, before lupus I used to be a sun worshipper. From sun up to sundown, I could be found outside. Then, I got sick.

Actually, it was a particular incident when I was in middle school that led to my lupus diagnosis. I was at summer camp, and we had been playing games outside all day. When we went to dinner that evening, I had a headache and was feeling nauseous.

The camp nurse thought I was suffering from heat exhaustion. She told me to hydrate and go lie down. Then, she called my mom. Mom, being vigilant, came and got me and took me to the doctor.

You see, I had already been experiencing other symptoms of lupus. My joints were hurting and inflamed. My stomach was swollen and my reflux was bad. And, I was already on anti-seizure medication.

So, the doctor checked my skin. Sure enough, it looked like I had hives. And, the doctor hospitalized me for further tests.
fatigue from sun exposure

And, that’s when I was diagnosed with lupus.

So, for me, sun exposure doesn’t cause the butterfly rash (I don’t get that much anyways). Instead, I break out all over. And, I get so tired and weak. My head pounds. And, I feel like throwing up.

My whole body hurts. It’s more than just my joints. My muscles hurt.

Moving hurts. Lying still hurts. Overall, I just hurt. And, I run a fever.

What Helps

So, I began a campaign on staying indoors during the day. But, that didn’t totally help either. Especially, if I was at school with the fluorescent lights.

Besides, I couldn’t live like a vampire my whole life. Finally, years later, I arrived at  a point where I had to do something. Lupus had taken enough of my life.

So, after research and talking to my doctor, this is what I find helps with photosensitivity with lupus:

  1. Wear protective clothing- Buy sun protective clothing with a UPF of 25 to 50 or higher. Dark-colored and tightly woven fabric like polyester sun umbrellawork better. Be sure to wear long sleeves and pants, if possible.
  2. Wear sunscreen- And, I mean constantly. Use an SPF of 30 or higher. Make sure it is broad spectrum and hypoallergenic. And, reapply every couple of hours. Use at least an ounce and apply 30 minutes before you go out.
  3. Use shade- If you can’t be under trees or awnings, use an umbrella. Wear a wide-brimmed hat and sunglasses.
  4. Stay out of peak UV times- That’s between 10 am and 4 pm. Also, be careful of cloudy days. Clouds don’t filter UV rays.

I know, the outfit can look ridiculous, but safety is what’s important. I’d rather look silly than trigger a flare.

Plus, I don’t have to give up on my favorite activities.

By the way, ladies, if you’re looking for a great sun protective hat, check out my post5 Best Women’s Sun Protective Hats. These hats are all rated UPF50+. And, you look good wearing them.

You Don’t Have to Feel Like a Vampire

That’s just it- lupus photo sensitivity doesn’t have to stop you. But, it does require that you change your habits.

Honestly, that’s a huge part of living with lupus. It’s learning what you can do and what you can’t do. Lupus requires some adjustment.

And, that includes how you minimize sun exposure. With proper protection, you don’t have to feel like a vampire.

More importantly, you can enjoy a better quality of life. It’s not about stopping. It’s about minimizing the effects.

If this post helped you, please share it to help others.

If you have any questions or comments, please leave them below. Discussion is part of the process of living a better life with lupus.

Wishing you better days ahead,

Chris

lupusisgoingdown.com

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10 thoughts on “Lupus Sun Sensitivity- Don’t Feel Like A Vampire

  1. I have never really known that much about lupus nor that is can cause sun sensitivity.  I think it’s one of those diseases you hear about but don’t really know that much about how the patient suffers.  I’m really glad you posted this article so people can understand more about how someone with Lupus is suffering and why they are trying hard to avoid the sun rays.  Are there any medical trials ongoing for medications to help clear up symptoms of the disease?  Or, is it still not really researched as you say?

    1. Actually, I never said it isn’t researched. Instead, I said I was tired of being  hearing, “not much is known about lupus”, but that was years ago. Recent studies have been conducted on lupus photsensitivity, and that’s the research that I’ve read. Mostly, that “lupus is mysterious” attitude came from doctors that didn’t know how to address the collective nature of my symptoms when I was younger. Since my relapse, so much has changed on the information front. Plus, I now see a specialist that works with lupus patients. And, as far as I have seen, most of the studies are about trying to determine why photosensitivyt in lupus happens.

  2. First, I’d like to applaud your site!! Simple, easy, and informative!

    Now to the article, Lupus can be so challenging. I commend your attitude on combatting this disease! I have had a few clients over the years that have found sun sensitivity to be as bad the brain fog. 

    While you may not be a Doctor, per se, you have a Ph.D. in Lupus! 

    Thank You for sharing your knowledge and for the education you have given me here today!

    Shaunna

    1. Thanks. I’ve always been a learner, and I figured that if I was going to rise above my situation, I needed to be informed. You can’t combat what you don’t know. Also, it’s my life and my body. I won’t allow attacks from outside source, and it’s time I do something about the attacks from an inside source- my own immune system. I’ve wasted too much time in a depressed state and missed too much of my daughters’ younger years on lupus. I can’t get those years back. All I can do is handle my disease better from this point on. 

  3. Hello Chris – this is like another side of sunlight damage I’ve never come across before. I always considered being exposed under the sun unhealthy. People around me are passionate about the “sun-kissed” look, tanning seems athletic and trending. However I have really bad reaction to tanning. It felt unhealthy to me however I just viewed it as my own body’s inability to cope with the damage. I did not know about the sensitivity or in worse case, possibly allergy until now. Thanks for this article I feel there is something I have to do about apart from running away from the risks. Cheers!

    1. Yeah, my time in the sun is anything but “sun-kissed”. UV rays damage cells in everyone. For people with lupus, that damage just intensifies our suffering. But, it’s not only sunlight that can cause this. Too much  compact fluorescent light can have the same effect, as well. To combat this, I look for light bulbs that emit the lowest amount of UV rays. Also, you can buy light shields and special shades. 

  4. Thank you, Chris. My doctors are considering changing my diagnosis from UCTD to Lupus, and both the dermatologist and rheumatologist urged me to stay out of the sun (I get the face rash almost instantly, plus the other fun stuff you described). I’ve been struggling with this, since I am also a sun worshipper and summer is usually my favorite hobby. UCTD/Lupus has already taken enough from me. You’ve made me feel so much better about it all.

    1. You’re welcome. Like I said in my post, I know the feeling. Even though others around you may not understand what’s going on in your body, you’re not alone. You have a community of lupus warriors there to support you. If you ever need anything, be sure to stop back by or email me at chris@lupusisgoingdown.com. I’ll help you the best I can or point you in the write direction.

  5. So thanks for the insight. I was diagnosed with lupus,fibromyalgia and osteoarthritis in January. Heard sun could do that to lupus patients but hadn’t had it happen to me. Fast forward to July 4th 2019. Went on my walk hot and humid. Left the house feeling ok. Came back sick and in a lot of pain. All of the symptoms you described. So now I need to follow some of the advice. Thanks

    1. Yeah, I spent a huge portion of July 4th inside. I’ve already been experiencing a flare, so I wasn’t feeling up to going outside. But, if I did, I would’ve been protected. I break out in hives if I don’t. Yeah, you really need to protect yourself. I hope you get to feeling better soon.

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