Lupus and The Sun, Are They a Good Mix?
I loved the sun and the sun loved me…until Lupus came and turned my world upside down and to the left a little.
Aren’t you sick of reacting to the sun’s UV rays within 10 minutes of being outside? I am too.
I would walk outside to my car and already feel the 3 spoons I had left leave my body.
It. was. exhausting.
But then, I started researching more about why this happens. Because once you figure that out, you can set up a plan of attack.
So, that’s what I did 🙂
I figured out some ways to prevent dehydration, lupus heat rashes, and preventing heat intolerance symptoms.
I’m going to tell you everything on lupus and feeling too hot and all about lupus heat intolerance.
Symptoms of Lupus Heat Sensitivity
Have you ever walked outside in the hot sun and felt your soul leave your body?
That’s basically the devil doing mean devil things. Kidding.
It’s the sun.
Let’s say you’re outside on your porch sipping on organic, free of red#40 and food coloring electrolyte powdered water and you’re still struggling because of the heat.
You thought you were prepared and pulled a fast one over the sun, but the sun taught you a lesson. Yet again.
I may be speaking from personal experience here. But, I think you can relate, right?
The heat takes your breath away.
You get nauseous.
You feel lightheaded.
Some may go blind temporarily.
You start to get itchy OR your skin starts to turn red with small bumps. It’s so hot when you touch your arm and it’s been 15 minutes (ugly crying).
Lupus and the sun don’t mix anymore.
So, now not only are you feeling immediate symptoms, but this can trigger joint pain, joint soreness, butterfly rash, fatigue, and sometimes a proper Lupus flare-up.
Experts say humidity can aggravate joint soreness, while exposure to the sun’s UV rays seems to throw the immune system off balance. Typical Lupus.
Lupus Life Hacks®
- Red rash: Can be bumpy, red and anywhere that the sun was exposed. The butterfly rash is possible too.
- Ankle/knee swelling
- Nausea, lightheaded
- Extreme fatigue
- Temporary blindness or blurry vision
- Numbness in extremities
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Causes of Lupus Heat Sensitivity
Plot twist warriors!
This can actually be a sign of a few different types of underlying conditions. Commonly, we blame everything on Lupus, but sometimes that’s not the case.
Here are a few things you should check first:
Your metabolism and temperature are linked. So, when the temp increases in your body and higher body temps speed up metabolism. Making an overactive thyroid cause overheating.
Thyroid problems and Lupus are common friends or foes to us. Most of us have underlying thyroid issues, but our doctor’s don’t care until our numbers are skyrocketing high. However, if we catch it when it starts to creep up, we could save our body a year of symptoms.
Basically, when too much thyroid hormones are released, your body’s metabolism gets ramped up, causing many symptoms. For example, tremors, unintentional weight loss, accelerated the heartbeat.
This is when the thyroid gland doesn’t produce enough thyroid hormone. That could be because there is chronic inflammation of this gland and it can leave permanent damage or the thyroid cells die, making the gland unable to produce enough hormones. Symptoms are fatigue, cold intolerance, brain fog, weight gain, dry skin, and hair loss. Sounds like Lupus to me!
Another cause is Hashimoto’s. This is an autoimmune disease where your immune system attacks the gland.
Interestingly, gluten has a protein that is so similar to our thyroid gland that our body thinks it’s attacking gluten, making it go crazy. That’s why it’s strongly encouraged to avoid Gluten whether you have Celiacs or not when suffering from any thyroid condition.
If you are cold or heat intolerant, you should start taking your body temperature and find out what really is going on. If your temperature is consistently below 97.8 F ( like me) chances are you have a slow metabolism too.
Low thyroid hormone function can be a cause of low body temperature and low metabolism, even if blood tests show your Thyroid Stimulating Hormone (TSH) is normal. Your body may not be converting T4 (the inactive form of thyroid hormone) to T3 (the active form.) Or your cells may be resistant to T4. This condition is known as Wilson’s Temperature Syndrome (WTS.)
Testing: A general rule of thumb for optimal ranges of blood work is if your lab work shows your TSH levels are greater than 2.0 you have thyroid disease.
Please get this checked, it could stop or better manage your fatigue, brain fog, and weight gain. I highly recommend seeing a doctor who practices integrative medicine because they’ll test you for everything and look at your bloodwork much closer than your current doctor.
This is another common syndrome that many #lupuswarriors have. Research has found that Fibromyalgia sufferers have flare-ups when they’re in hot or humid weather.
Symptoms are similar to Lupus in that you can feel: muscle pain, pain sensitivity, headaches, fatigue, and anxiety. Some actually feel this when it’s very cold too.
The sun causes lupus heat intolerance and that is caused by poor blood flow to the skin, lessening the ability to sweat. Sweating is a way that your body controls your temperature.
Drugs that treat arthritis can increase your sensitivity.
- NSAIDs like Advil, naproxen, Celebrex
- Methotrexate and Azulfidine
- Diuretics (for high blood pressure)
- Tricyclic antidepressants
- Cardiac drugs
If those are not the cause, here’s why Lupus heat intolerance is a thing for us Lupies.
Doctors suggest that when your body has an increase in temperature, it causes your nerves to conduct electrical signals less efficiently. Messages are slower to and from the brain, heat further slows, and can stop the communication from the brain and spinal cord. This is an indication that our inflammation is NOT under control. That’s where diet change and proper supplementation have saved me from dealing with chronic inflammation too.
Another probable cause is the UVB rays from the sun or UV lights can trigger our skin cells to give immune signals. That causes WBC to come and attack and destroy the skin. When you have inflammation and a rash, this could be why.
Sun exposure also messes up the natural process of cell death, called apoptosis, by killing off more skin cells than normal.
Amazing Ways to Stop Lupus Heat Intolerance
Were your biggest symptoms of heat sensitivity and heat intolerance rashes, fatigue, migraine, feeling lightheaded and dehydrated?
Me too. I could go on probably with more. But, let’s get to the SOLUTION.
Electrolyte powder or coconut water ( a natural one without added sugar).
Note: Anything that I suggest should be assumed that it’s organic, non-GMO, dietary friendly, and has no food colorings or crazy preservatives.
Each suggestion has a bit of a different pro so it really depends on your preference. Unfortunately, I don’t carry any of these yet. But, they’re on my list to contact.
Coconut water is a cure-all. But, it’s popular so be wary of companies. When buying coconut water look for coconut water in the refrigerated section, that uses young coconuts, is not pasteurized and does not contain any added ingredients like natural flavors, fruit juice or sugar.
Nuun – Simple ingredients and include fruit powders and leaf extracts. Plus, it tastes really good.
Nooma – Formulated from coconut water and sea salt to provide you with sodium and potassium — two essential electrolytes.
DO NOT DRINK GATORADE or Pedialyte ever.
They are filled with sugar and food coloring that is linked to cancer. Lupus makes us more susceptible to cancer, so let’s decrease the odds as much as possible.
I had my electrolyte powder and that helped me not get dehydrated when walking around or on my boyfriends fishing boat. Even though I wasn’t as susceptible to passing out or getting severely dehydrated in 15 minutes anymore, I would still get so overheated.
Which brings me to the second Lupus Life Hack® to my combination approach to living the sun life with Lupus.
Okay, so you’re on a budget right? Me too girl ( and man, yeah I see you too).
So, I was half prepared. Now a combination approach is best with Lupus because it’s just not that simple.
I found something that I had been wishing was available and I had no idea it was even out there.
All of a sudden, the Lord finally delivered on another prayer. #thankyoujesus
He was like, “Janeen, I’m sorry you have Lupus and I see you trying so hard to enjoy your life and to make the best of it, here’s another bone.”
“This vest is covered by insurance, it’s fitted, stretchy and comfy, and it keeps you COOL, not cold.”
Then, I said, “Thank you, Lord, because I’m sick of Lupus trying to win. But, clearly I’ve got you on my side, so I’m winninggggg.”
And that’s when I called the founder of ThermApparel and we chatted about how he’s another local, small business that originally created this cooling vest for those with MS because they suffer greatly too with heat intolerance and heat sensitivity. He’s so nice and I’m so happy we were able to connect because now you can suffer less just like me!
Anyway, he told me the science behind it and how he really cares about all of us which is why it is the best find of 2019.
The UnderCool vest is made with non-toxic chemicals, it’s USDA Certified Bio-Based meaning it is non-toxic, organic, and biodegradable material.
The cooling packs DON’T make you all wet, they don’t burn your skin, and they aren’t “cold”, so it doesn’t make you cold. How is that possible? Science.
Literally couldn’t get any better.
Then, he told me that even if you don’t have HSA/FSA debit cards, it can still be covered by your insurance because it’s considered a DME.
OMG, it just got better.
AND he said that most insurances will pay for it if your doctor submits a note to them and tells them it’s only $199.99 because anything under $500.00 means no pre-authorization is required. Of course, some insurances are sticklers, so be prepared for that phone call so you can be a winner like me.
I refuse to recommend any products that don’t align with my core values of Lupus friendly ingredients, potency, and affordability for quality.
Now that I’ve got my sun killer combo approach. Don’t forget to keep this in mind too:
Check out this sweet Infographic on how to Enjoy the Sun with Lupus.
Share on social media to help our warrior friends and tag @lupushealthshop
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Now, that I’ve shed some light on the sun (get it, haa) I hope you’re feeling more confident on going out there. You’re more prepared now to enjoy your time out in the wilderness or your backyard like me!
Don’t forget you’re not invincible though, still take precautions so that you’re successful.