Does heat affect you like the sun?

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mamamuse
Regular Member


Date Joined Dec 2006
Total Posts : 102
   Posted 6/5/2008 10:14 AM (GMT -7)   
That wasn't a very clear subject line...
 
What I mean is, do you find that just being out in extreme heat can cause you to flare, even if you're careful to stay out of direct sunlight?
 
I know I'm sun-sensitive...I broke out in rashes from sun exposure years (over a decade, actually) before I was diagnosed with anything autoimmune. I'm also very pale, so I always slather on sunscreen and look for shade if I'm outdoors. But I find that just being out in the heat for a while is draining. I almost always end up with that flu-like feeling later in the day, even if I'm just sitting in the shade chatting with a friend. The heat just zaps me.
 
And we're headed to Florida twice this summer...lucky me! LOL
 
Just wondering if others have experienced this or if it's just me. :-)
Kari
Wife, writer, artist, homeschooling mom to 2 wonderful boys
Lupus (dx May '04), arthritis, PCOS, being tested for vasculitis and Behcet's
Now taking: plaquenil, limbrel, metformin XR, ibuprofen and the occasional percoset for pain


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/5/2008 10:43 AM (GMT -7)   
Kari, it's not just you. I am also heat sensitive and get pretty sick if I get too hot. The heat just seems to make my lupus symptoms worse - it's not as bad as my reaction to the sun is, but it can make me feel pretty crummy.

Maybe they'll have unseasonably cool weather when you are in Florida (wishful thinking). If I remember right there are others here who don't tollerate the heat well either.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 6/5/2008 11:43 AM (GMT -7)   
Too much heat leaves me lethargic and ill. I get sick to my stomach and don't feel like drinking or eating and it takes quite a while before I recover. I cannot survive summer without A/C or central air. I avoid being outside like it is poison because it pretty much is to me. I do not deal well with tempatures outside the 70-75 degree range. Too much cold leaves me in so much pain I want to cry. I can't win either way. I passed on my problems with heat to my daughters and only time will tell if my son has that issue too.

I personally avoid being outside because even in the shade you get UV exposure. I tend to only go out once the sun goes down.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 88
   Posted 6/5/2008 2:36 PM (GMT -7)   
It's not just you. Just sitting outside fishing with my boyfriend or even mowing the lawn with the rider totally zaps me. Before I got sick and cooped up in the hospital without the opportunity to be outside, I never spent any significant amount of time outside. Now I spend as much time as possible out there. I find myself getting depressed if I can't get out. I just always try to drink lots to make sure I don't get dehydrated on top of it.

Lots of Love!
DQueen
 
 
 
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure


tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 6/5/2008 2:47 PM (GMT -7)   
I live in Florida and have problems with the heat myself. Drink plenty if water start before you go. Try also gatoraid. Put on sunscreen and keep putting it on. Just because you put it on once you need it all day long. Try to go out early in am and later in pm remember our hot time from 12-5. Do not forget a hat. Keep your head protected very important.
 
                                      


Lupus since 2005, Fiberomyalgia since 2006,  sjogren's syndrome since 2005,  diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 6/6/2008 8:06 AM (GMT -7)   
Im much more heat sensitive than I am sun sensitive.  Anything warmer than about 72 degrees (22 celcius), I'm done for.  So summer is NOT my favourite time of year! 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 6/6/2008 11:15 AM (GMT -7)   
I actually miss winter right now as my central air unit is not functioning properly

Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 6/6/2008 2:01 PM (GMT -7)   
Looks like I'm in great company!

No air conditioning here . . . *sigh* We go a-naturel !! I put my corn bags in the freezer and use refrigerated water bottles to help cool me down.

The heat zaps me fast !! I can't even tolerate a hot bath when its cold.

So . . . I try not to complain when its cold outside!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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Harmony
Regular Member


Date Joined May 2003
Total Posts : 56
   Posted 6/6/2008 5:27 PM (GMT -7)   
I have the same problem. I'm more sensitive to the heat than the sun. Part of it may be the Raynaud's or some other circulation problem. I have problems just standing in one spot anyway (autonomic dysfunction), and if it's hot, then my feet begin to turn a lovely shade of red-purplish-blue and if I don't get out of the sun and sit down quickly, I'll faint. I've had this problem my entire life. I could never survive without air-conditioning, although the cold can cause me pain too. At least I can stay conscious in the cold and pile on sweaters or heating pads.

The sun can leave me feeling a little fluish the next day.

The only thing that really causes me rashes is my halogen bedside light. I love the light. It's great for reading and has a dimmer switch, but the side of my neck by the light always looks sunburned with a slight red rash.

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/6/2008 11:51 PM (GMT -7)   
Kari--
In addition to the sunscreen and coverups, umbrella, hats robes, etc. don't forget that there may be some red tide in Florida, which can cause some people to become very ill if they are near the beach. The gulf coast seems particularly affected by it, I don't know so much about the Atlantic, Tink might know more. Anyway, the red tide is dangerous for us on immunosuppressants and can make you so so sick. Also, avoid the raw shellfish and undercooked seafood. I had a good time in St. Augustine, going on ghost walks at night and enjoying the historical areas during the evening hours, keeping me out of the sun when I was there. I hit the beach in the early morning or evening. Next time we are going to Ripleys for sure.

I hope you enjoy your trip. If you're lucky we will have summer showers that will dim the sun somewhat, if you don't ming a little rain.

And yes, heat really gets to me. I cannot cool down. I have to put a cool wet rag behind my neck and drink water or gatorade, and/or take a shower or go swimming. It can take me over an hour to cool down and my heart goes crazy.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 6/7/2008 12:49 AM (GMT -7)   
Good topic!
Sun=itchy, bumpy rash on chest; itchy, mottley, uneven type sunburn on other exposed areas; now use 50 sunscreen. I feel unwell, sluggish, get a headache, and sometimes achey and sick to my stomach.

Heat=especially when combined with sun always makes me feel sick...no energy, sick to my stomach, headache, sick to my stomach, no appetite, etc. Do not even whisper the word humidity. I hate it. It makes me feel worse.
I, too, cannot survive summer without A/C (yes, I am a wimp--grew up without it but now it's a necessity) but I have severe Raynauds year round so I keep gloves handy all year because the A/C brings attacks on.
The good news is that my joints are better in the heat :-).

Cold=ick ick ick, too! Can't get warm! Bad for the Raynauds and the joints. Warming up can take forever. There are blankets in our cars so that others don't suffocate because I need the heat on forever and they are about to have heat strokes. I wear gloves inside of mittens. I have found that the instant heat packs that are for wearing inside of gloves fit nicely inside the pocket of jeans. they help to keep the body warm.

Moderate= just right.

xoxo emmie (Goldilocks)
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 6/7/2008 2:12 PM (GMT -7)   
cured4real  let me know when you come to St Augustine my fave place. I had a weird thing happen to my photos of the ghost tour. When I got home to down load them they downloaded then they were gone. ALL gone from my camera and the computer. Nothing I had some great photos of orbs and some hanging in trees to. I have no idea what happened one min. they were there and the next gone...   The light house is really cool to and down town I love down town and the outlet malls....I love all the food to. bananas on a stick the ice coffee. love it all. Its 20 min. away.  
Lupus since 2005, Fiberomyalgia since 2006,  sjogren's syndrome since 2005,  diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/7/2008 10:47 PM (GMT -7)   
I'm going to be at Jacksonville Beach for the 4th of July. I'd like to come down early and stay in st augustine and go to Ripleys and maybe the ghost tour again. All our camera photos ended up not showing pictures where we aimed at. I mean like pictures of the guide ended up pictures of the sidewalk and stuff. It was creepy. We saw some orbs and felt some strange stuff. Mostly , the stories are great. It would be nice to meet you since we live sort of nearby. Maybe you could show me where to get some good aromatherapy oils and stuff. Also looking for a good endo in the area if you know one.

We could have a blast. I'd rather see the fireworks in St.Augustine, but my folks want to watch them at Jacksonville beach. I bet they are awesome in St. Augustine. I didn't get to go in the lighthouse either. I live by the Golden Isles (St. Simons and Jeckyll) and they are nice and resortlike too, with a lot of history. I have a pass to all the parks in Georgia for three people for the whole year. Ft. Frederica isn't as cool as St. Augustine, but there is some nice history there.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 6/8/2008 9:57 AM (GMT -7)   
Heat,Humidity,Sun..affects me also, sick to my stomach,rash,feel weak just want to sleep.A.C on all the time. share chores around the house even helping cutting grass, since my hubby is a brittle diabetic we do all chores together even food shopping. It's horrible!! If there were a place cloudy around 60 to 70 dregrees all year round I think I would move there. LOL Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
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Tracy C
New Member


Date Joined Sep 2016
Total Posts : 1
   Posted 9/5/2016 1:32 PM (GMT -7)   
Yes Heat absolutely affects me ! I literally cannot be in the sun or heat for more than a few minutes or I will "flare up" with the rash,nausea,fever, flu like symptoms. I've been newly diagnosed so this is very hard to wrap my head around. Most summer days I feel like a prisoner in my own home. I used to very much enjoy being outside with my children and dog, used to enjoy gardening, yard work, etc. but can no longer enjoy or participate in any of those things if I want to feel ok. Fall is my favorite season..cool temps and hopefully cloudy days. I definately need to move to cooler cloudier climates some day. I would never wish this on anyone, but I just pray every day to get me through most days and try to smile through it all. I try to teach my family that you just have to wake up and put one foot in front of the other and keep going with a smile. mad cry

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/5/2016 1:40 PM (GMT -7)   
Welcome, Tracy.

You have posted on a topic from 2008, so you may not get many replies. I encourage you to start your own introduction thread so we can get to know you and so your post will get more attention.

That said, yes, heat and sun affect many of us. I tend to be okay if I stick to the shade and am sure to remain hydrated, but everyone is different.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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