Has anyone experienced this? Last weekend I attended an outdoor wedding reception and dinner. It was 100 degrees--I live in Texas. It was a big family event and we stayed at least three hours. There was no way I could ask to leave as I was with five family members in one SUV in a city about 30 miles away. My clothes were absolutely soaked with perspiration. I got so hot I was sick at my stomach and couldn't eat but a few bites. It was difficult for me to walk. People may have thought I had too much to drink and I don't drink alcohol. One person asked, "Are you OK?" All I could do was drink glass after glass of ice water. For several days I had chills, sweats and no clarity of thought. Yesterday, a friend mentioned electrolyte depletion; I immediately started drinking lots of organic "super" vegetable juice (which states on the label it is excellent for restoring electrolytes). I feel much better today after being in bed for most of four days. I have been forcing myself to eat every day (as I do whenever I flare) but wasn't focused on replenishing electrolytes. I know the brand "Smart Water" is good for restoring/maintaining electrolytes, and from now on I think I will carry it with me when I know I will be in hot temperatures---which I will now avoid! I have heard "Gatorade" has sugar and other undesirable ingredients. At the reception, the 80-90 year olds were doing much better than me (I am 61). The next day, several family members took their grandchild to a big amusement park and stayed until 11 PM! These folks are about the same age as myself and go at a pace that would leave the greyhounds (dogs and buses) behind. After a diagnosis of Lupus in 2006 (and likely having the disease for ten years before that time) it seems to keep progressing and I keep having new problems although I try to do everything right (i.e. diet, meds, supplements, rest, regular doctor appointments/being a compliant patient). Could it be lupus (SLE) intercepting with old(er) age? Likely because I was a Type A most of my life (worked 35 years), I keep expecting things to change and compare myself to other healthy people which is absolute nonsense. Any feedback is appreciated!
You will find that most all of us with Lupus have type A personalities. My doctors have noticed it too. I sweat a lot and steroids make us sweat more. I use Gatorade as most times during excessive heat water will make me vomit. I have trouble eating and immediately am sick when in the heat. lupus can attack anything, including our digestive system. Yes I also agree our bones age faster and part of that is lupus and part of that is due to the steroids. don’t be afraid to go sit down away from the crowd for a bit. keep your cell with you so you can catch up with others later. always have your water or Gatorade (which also seems to help with excess fluid retention) with you during the hot summer months. I worked 30 years. I am almost 50 and walk like 80 many days. it’s hard to cope with but you can do this! lots of luck and love to you, Sheri
Being overheated has gotten me feeling pretty uncomfortable, but it was probably moreso caused by the heavy, toxic dose of sun. Sunscreen is no match for 1-2hrs of peak Seattle sun… So double that time and turn up the heat/UV potency and I’m not the least bit surprised by your experience (but I am so sorry for it!) Aside from the outdoor activity itself, UV was also getting through the car windows to you! That’s happened to me a bit before, and the way I could tell it was definitely from riding in the car was on a trip back from Portland (2.5 hr drive) when I hadn’t been outside at all but still got my sun symptoms (nausea, dizziness, confusion, achiness, flushing in mt usual malar + forehead + upper-chest areas, extreme fatigue and a sense that I might pass out even sitting down.) I didn’t have sunscreen on (it was March, and who puts on sunscreen to ride shotgun on a car trip in March!? Lupies have to…) However, I noticed it coming on and immediately switched to riding in the back seat so there wasn’t all this UV streaming through the windshield onto me! It turns out that although windows filter out burning UVB rays, they let UVA right through and we are quite sensitive to both!
Some key strategies you can use to prevent this happening again WHILE attending the event rather than having to miss out entirely:
Wear sunscreen, min SPF 30, everywhere including under your clothes!
Reapply the sunscreen to exposed areas every 2 hrs or right away after sweating.
[Notes on choice of sunscreen: Use a mineral-based sunscreen, especially for reapplication) because it works immediately and won’t photo-degrade (break down in the UV light) if it hasn’t soaked in far enough yet. Some chemical sunscreens also have mineral (titanium dioxide or zinc oxide) to up the overall SPF, and at least having the mineral one in there might protect more immediately including blocking some pfotodegradation. But since chemical sunscreens can be so irritating (and are scary chemicals to boot), I use all-mineral ones. That means only an SPF of 30 before it gets too chalky, but what the marketing specifically hides from general knowledge is that 30 is only a few percent less coverage than 50, and that the difference between 50 and 100 is too small to even detect. It’s not a linear scale, and 30 is already on the high end of protection! It also helps keep you from the false impression that the sun is “blocked”… No sunscreen can do that and avoidance of sun is the most important principle to follow with sunscreen as your best friend for getting through the dangers of participating in life 
I know that joke isn’t very funny, but since it’s true, maybe it helps to have a laugh!)
Have a plan for ESCAPE from the heat or sun if it’s getting to be too much. Take breaks proactively and a longer break when you feel it creeping on might save your ability to stay. But if you pass the tipping point, you have to get fierce about getting out of the sun no matter who it offends or disappoints (including yourself… I hate when people get mad at us like we are ruining their good time with our drama. Would you like to be stuck in the back seat of the car feeling sicker than a sick dog while everyone you love has fun in the sun? To have that be your life every day forever? Didn’t think so. But instead I apologize and try to assert more gently that it’s a matter of need not choice.)
Shade isn’t actually enough relief, since a lot of UVA gets through and both A and B reflect from all over the place. Better off back in the car (lying down in the backseat would be ideal) with the A/C. But far better than that is indoors.
Here’s a great recent example of how sun sensitivity takes a much more devastating toll on our lives than anyone can seem to understand (they just think you burn faster and complain too much about a small thing.) I went on a weekend trip to Mt. Rainier national park two weeks ago, so I called ahead to our accommodations to ensure I could relax somewhere indoors or heavily shaded in thick woods (luckily the latter was true, beautiful and so magical to be able to enjoy the outdoors for once!) Check out at 11:30 would’ve made me vulnerable to the strongest rays, and I needed to avoid them till at least 2pm before getting behind a windshield to drive up to the trailhead area (called Paradise, 23 mi away and 2000 ft up from where we stayed) to meet my boyfriend who rode his bicycle up. I had to still bail and wait in a restaurant for him to come back down because I got too much sun during my attempted avoidance. I thought our plan was for him to proceed without me if I didn’t show by 3pm sharp… But he was feeling more patient (and worried) than he initially let on and stayed 2hrs extra up there looking for me! Very sweet, but the heat I got for it after we reconvened at the bottom was quite bitter! He still hasn’t forgiven me for the way I blew him off and didn’t stick with the plan in an area without cell service etc… And that’s all after I was already feeling totally misunderstood and unduly pressured by his initial insensitivity to my (unusual, confusing, frustrating) needs and limitations! But how could he know what it feels like to be stuck inside it? So I’m being patient for a time when he can actually calm down enough to hear why I “would do such a thing” to him (letting him down and then keeping my cool like it was no thing… Which it wasn’t, he came down to find me chilled out and restored from my sadness/frustration of not making it with a good meal, a stubbornly positive attitude, a scenery change, breathing techniques, and some of my favorite music with a good long, hard cry!
After the flare and initial emotions subsided (took a week), I gathered the reserves to be patient for him to calm down and be willing to understand more later on. Into the future, anyone I stay with has to be more tolerant, sensitive and cooperative than that experience, rather than antagonizing and taking it personally, but I get that it’s way too much to ask for him to magically know and keep his own disappointment shielded from things neither of us like and can’t control very well (though I can manage it much better when he gives me the leeway to do so! If I can get him to see this it might not seem so hard to tolerate.) I’m happy enough with his word that we can go through it in the near future, but going forward it’s going to have to go differently! And the hardest part to express adequately is that he’s not doing things “wrong” or letting me down (which he hates to hear or think of) by not magically knowing how to react to something I’ve spent a year leaning to navigate! He’s relatively new to this, it was our first time trying an outdoor trip (indeed my first time going on an outdoorsy trip in the whole year since I was diagnosed!!) I truly want to help him feel better about this time and have better preparation & tools for next time, but he’s still defensive so I’m still waiting for a better time (two weeks is way too long in my book to resolve these things, but we are getting along in the mean time and the extenuating circumstances include his stress over delayed closing on his offer on this house we are living in! He’s been a tenant for years, I’m now a +1 in his precious retreat space who isn’t contributing a dime, and if his purchase doesn’t work we both have to clear out!) I also hope it will help him feel better knowing there are reasons (not excuses, highly important reasons) for me “letting him down” that will be more predictable as he understands them better and in any case do NOT reflect how much I care for him and want to meet his needs of any kind. Sometimes I just can’t, and for a mid-30s cycling machine, it can be hard to grasp that a mid-20s former acrobat sometimes can’t. These are hard realities we have to live with that others do not, and even though it’s not fair for it to be one-sided, it’s not actually possible for someone else (even who cares for us greatly) to truly understand. That’s why we have each other here for support and mutual understanding, and I’m so glad to have read such shaping perspectives from all of you in preparation for sensitively handling these agonizing challenges with someone who IS willing to go out on the limb to try to be there for me and take the risk of falling for me. If I remember that’s the position he’s in, it helps me be much more patient and calm in my approach to explaining and advocating for myself (and alleviating his sense of failure or disappointment in the midst of it!) We just have to bear in mind that we’re stronger than them (those in our lives who don’t bear this extent of burden) and need to handle them gently in order not to shut them out and thus shut ourselves out of the support they are willingly offering despite all it’s flaws… And it really does feel amazing to have someone be willing to take it on after the person most charged with caring for me (my mother) outright rejected me and begrudgingly provided only financial support while withholding all sensitivity and understanding. I guess everyone helps in the way they can, and we have to appreciate it for what it is even when it’s not actually enough. How could anyone do enough for us? By having this terrible disease is living with that gap!
Great suggestions on both counts!
Ann A. said:
I am escaping much family drama by taking the train to my son’s graduation.There are distinct advantages to having a reputation for eccentricity and independence.
I love the sunshading in my car. One form from the DMV website, one doc signature, a wait for the bureaucratic wheels to spin, $150, and my car is no longer a toruture chamber.
Wish I could drive to the graduation.
I have had really heavy sweats --literally pouring down my face..and I mean pouring...I wonder if it was the same thing? It was right before I found out I had the lupus....and wasn't on any medications....since finding out about the lupus I just don't go outside in the heat for any extended time at all....I always wondered what that was....I figured it was mid life changes and lack of hormones...but it was before I knew I had the lupus. I have nothing to offer you as feedback, but you have certainly given me some insight. Thank you for sharing.
I was diagnosed in 1996 with lupus. The past 3 summers have been horrific for me. Just going from my house to the car, I break out in a sweat with my hair soaked and even dripping off my nose…my family just can’t believe how much I sweat and they are cool… I am 52 yrs old and never did I dream that my summers would be so bad now…thank you for posting this. I was wondering myself about it… Hope things get better for you… God bless 
I have a severe sweating issue. I’m 36 its too early for menopause. I am on meds but I wonder now if I need the electrolytes or if I’m deprived of something els that makes me sweat. I hate it. It’s embarrassing
Oh my!, are you doing okay now?? Yes this happened to me at my first Lupu walk, even though , I didn’t really walk the complete walk, but was there for the most part-support for others, but yes staying out in the sun , without being covered or taking moments to get inside for a couple of mins, it is not good for us!! You enjoyed the moment and did not think, it is okay sometimes but don’t do it like that if you can help it . It is something about the sun and Lupus , I say that they are friends to one another!! Don’t fall for it , cover up and go inside as much as possible if you can! Rest for awhile, it is called a time out break!!!..Beverly L.