I've been experiencing a major flare for the past two weeks, unable to do much else but sleep. So yesterday was the first time in two weeks I felt strong enough to go outside. Well I don't know about where anyone else lives but DC is experiencing unusually warm weather. So anyway I went outside and after about 10 minutes I started feeling like I was weak again. This prompted me to think whether besides the rain, does Cold weather make me feel worse or Hot weather? Is there any where that has a constant temperature that does Lupus bodies good? I was just wondering how everyone else deals with the weather and all the changes it puts your body through.
I haven’t had any trouble with the cold. This last summer hit me really hard but my treatment wasn’t fully effective I’m not sure If that makes a difference. I hope u start feeling better 
The storms that move through our corner of Colorado always make me hurt a lot more and also feal weak. It used to be just winter storms but for the last year it is all seasons. I have had a tougher winter than usual. I am looking forward to Spring to see if the warmer temps help. Short of calling the doctor for prednisone, a heating pad and my bed are the only way I have found to cope with the “storm flares”.
I think my body just doesn't like change..but hot weather has always been harder for me--used to cause migraines and now just causes massive inflammation
This is a very interesting thread. I live in So. California-but live at 4,000 feet, so the winters can be pretty cold. I also have Hashe Motos, so the cold nights work out better for me. I don't usually get cold chills any more, but still get the hot flashes.
OK, a bit of humor, but, maybe not far off???
We could all move to Forks, WA, the rainiest place in the U.S. of A.?
OK, seriously, I live in the high desert of So. CA, and I have to put on sun block a lot of the time, always in the summer.
Ann A. said:
This is the time of year when the UV rays from the sun start hitting the area around DC strongly enough to cause problems. If you are photosensitive it is time to put on the sunscreen. Yesterday I really wanted to sit in the sun and feel the warm rays all over me - but that way lies a trip to the hospital.
I know some places that tend to be fairly warm all year round, but with my photosensitivity those are the places that require me to hide from the sun all year round.
I live in Houston, Texas and it really gets HOT!! here in the summer, which makes me feel weak as well, I am told that with lupus medications you have to avoid the heat and sometimes the cold. THe cold makes my joints hurt, and the heat makes me weak and sometimes experience a lupus fog. I am praying for you and hope you feel better. Many blessings and hugs xoxoxox
Boy do I knows how you feel…I am sweating all the time…day or night; whether it is hot or cold outside! Not sure whether it is the meds. Or something else. But it sure drives me crazy! Even if I found a place that had an even temp, I don’t think I could get my husband to move…very frustrated! Only thing that helps is to have a fan on me all day…wear lots of cotton clothes and sandals…and drink cool fluids…but, even with these measures, I am usually drenched 2 or 3 times a day…such that sweat drips off my hair on to my shoulders like rain!!! Ugh!!!
When I was initially diagnosed the cold weather was a problem my joints would hurt and I would be fatigued so I avoided it like the cold weather like the plague. Now it seems like with the warm weather especially sunny days I am having a severe reaction. I'm fatigued but now I feel weak and it seems like I'm walking in slow motion. It is funny to see how it is affecting everyone differently. My remedy is rest, rest, rest and more rest.
Hi --
I have SLE lupus & hot-warm weather makes me feel worse. Yes-this constant change of crazy weather has made me very--very tired & more depressed, 4 I don't want to do much.
I hope u r feeling better today. This may sound crazy, but I have been watching old TV shows, which remind me of when I was young-healthy, etc & makes me smile........
That's how i feel also when i haven't been outside in a couple of days , it's like i get very drained , so of course i return back in the house to rest . I have yet to figure out which does me good or bad , somedays i can do eery good with the heat , but mostly i ache with the cold moist air . And of course you know how that goes !!! So to answer the question , " am still taking notes on which temps. cause me to go into FLARES!!! smile Well stay in touch and hopefully we will get this situation under control soon ... talk with you later .... Beverly L.
Winter is much harder on me due to the snow....hard to shovel snow when you do not feel well plus reflect sun..but best you are bundled and covered well except for nose/cheeks.!
But truth is..i hurt all year round now period...is it more to do with fibro sure a large part is that and my RA. Only time i actually hurt from SLE is when my nodules grow(tumors) Sun Rashes. The fibro and RA really create all the pain including weather changes. So not sure how to answer your question.
I can say this is what i was taught and do. I wear sunscreen year round because it does not matter how hot the sun is etc you can still get rashes from it if you are sensitive( as my dermo said has nothing to do with heat has to do with sun's rays and my body being sensitive to it) to it and i am. So i wear sunscreen in my moisturizer...now you can find ones that work for you. I wear wide brim hats all year round as well. I do wear shorts in the summer (my one luxury i try to get away with) but sunscreen anywhere exposed or if i do not have sunscreen clothing than on my arms as well.
As to how our RA acts up weather changes ...yes it does and so does my fibro. I read and heard from doctors that if you lived in Boston than moved to Phoenix , yes the first few years you might feel better but than your body would adjust and be right back where you where.
In the summer i try my best to stay out of the sun from 10-2 roughly..sun is worse time! I have tried few times to cheat and paid for it with severe rash. I normally can feel the rashes popping out so i just get out of sun asap...lawn can wait till evening! Riding lawn mower so thought i could drive it fast...was why i even tried lol!
I do go and walk my dogs...but in summer try to avoid that mid day....if i am attempting a extra long hike and cannot help but be outside during that time...sunscreen with me and i found few brands that block it excellently but reapply it every 4 hours at very longest...about 2 hours when hiking.
I actually found that air conditioning can bother me just as much as heat if people have it on high...or you must go in and out of it...i almost always get bronchitis..so summer has it issues for sure!
Also something a lot of people do not think of but those florescent lights in offices/stores they can cause rashes as well. I had to make sure i never had desk or worked right under one or i break out at work!
One last thing ..this can bring on flare, make so sick i end up in hospital faster than any other thing I can think of right now...humidity..you know how some like sauna or hot showers with no fan or even hot baths with no fan...build up steam...for some reason that kicks off whoppers of things ... every lupus thing i can have that can go wrong...will go wrong and fast...my husband and i call it my 30 seconds...means pull over fast because i am going to more than likely pass out but sometimes i just puke and need to go bathroom depends on how humid.
Yes i been to Texas in summer...and i do not get how any one with SLE survives there seriously! Or any high humidity state..guess you live indoors except early ams and late evenings.
Oh and since here in Calif we have about it all...yes when I have lived on the beach up here in Northern Calif, Oregon and Washington, the really foggy stuff..where you cannot see you hand in front of you..that also makes me sick very quickly but in internal way...like my fever will go up from low grade to high for some weird reason.
Okay very weird part...my brother was also affected by steam/humidity same way.....and fog got to him too but he could stand that longer than I...maybe cause he liked going out fishing in ocean...you know saying if you are having fun less likely to get sick. Well i know that can be true...but i been sick on days i was having best times of my life so not all true.
I am just sorry you feel poorly. does not matter why...i just hope you feel better so you can enjoy your cherry blossoms!!
Oh all of you that are sun sensitive, i found this product that works like ...trying to remember what you called it that thick cream we put on noses in summer in 60's , 50's well...blocks both uva/uvb that well but with out the white cream ...if you like the name i can get it plus catalog that sells it. It may sound expensive but one tube lasted me all summer into fall....i use more in summer due to sweating and i am out more for sure. The catalog is great period for us women but if you have kids who either love to read or want them to like reading...they have by far the best children's book catalog plus they include some adult books as well that never once was disappointed. The two women owners try everything on themselves!! one is sun sensitive too!
Hope you really do feel better....
Lupus sufferers who also have Reynaud's tend to suffer more in the cold; while autonomous neuropathy, which sometimes afffects lupus patients, can mess with our internal temperature causing us to sweat more than others or get cold faster than others without this kind of neuropathy. Personally, I have both and don't do well in any extreme temperatures. Living in south Florida in the summer is pure torture for me so I don't go out in the daytime at all most of the season. When I visit family in NY in the fall or winter, I borrow my mother's old fur coat the whole time I visit. pax, pj
Maybe I should check on that b/c I sweat more than normal and I'm always cold to the point everyone around me is frustrated with my temperature changes. I have stopped going outside with the sun and warm temps b/c it is wiping me out. When I finally get to go to my doc I will mention all of that. Thanks.
pjarden said:
Lupus sufferers who also have Reynaud's tend to suffer more in the cold; while autonomous neuropathy, which sometimes afffects lupus patients, can mess with our internal temperature causing us to sweat more than others or get cold faster than others without this kind of neuropathy. Personally, I have both and don't do well in any extreme temperatures. Living in south Florida in the summer is pure torture for me so I don't go out in the daytime at all most of the season. When I visit family in NY in the fall or winter, I borrow my mother's old fur coat the whole time I visit. pax, pj
Hi Ann A, I know what you mean haveing to wear long slevees everywhere / all year long !!! ( i do the same thing also ) am really getting tired of haveing to do this . I want to go with my son in June to cal. , but so afraid of the weather climate chand=ge !!!, I've want to go with him , but of course i have to wait til the last min. to make a desion. Right now am haveing a SERIOUS FACIAL FLARE due to the high POLLEN count here in GEORGIA- my face is itching so BADDDDD ( am staying away from all doors/ windows and spraying the house down and haveing less traffic to come in and out .. This hard . >>> Well hope that you ar doig fine , talk with you later.... Beverly L.
Ann A. said:
It is always amazing to me how we all have our own experiences with this disease. The geographical variation is fascinating. When I am below the 37th latitude I must wear sunscreen all year round. These days that is when I visit family in Los Angeles, Tucson, Mobile, New Orleans, Orlando. The closer I get to the equator the the more I react to the sun. Above the 37th latitude (which is about Atlanta Ga), there are a few months that I do not have to be so obsessive about it. I do wear a face cream with sunscreen in it even in the winter time, but I do not have to keep applying it to my hands all day long. Yes, I wear long sleeves all year round everywhere I go. Here in central Va the months that I do not have to be so obsessive are November, December, January, and February. It is not about the temperature. It is about the angle at which the ultraviolet rays of the sun are hitting the earth. I am careful with fluorescent lighting. I wore sunscreen and protective clothing all year round when I worked under fluorescence. I am also careful about the light coming through the windows. All year round below the 37th latitude and from March through October above the 37 latitude, I am very careful about the sunlight that comes through window glass. Window glass screens out ultraviolet B but not ultraviolet A.
siskiyousis said:
Am thinking to that!!! I really need a change for a moment . I really want to see the pacific ocean , and also see what the west coast is like , but of course June is still a couple of months away !!! And hopping that am not in any pain then , and not having a facial flare … Talk with you later …Beverly L.
Ann A. said:
Hey Beverly, I went to Southern California last June. My folks live in Altadena which is right next to Pasadena. I didn’t have anymore trouble than I have here in Virginia in the Summer time. I handle southern California about the same way I handle ATL in the summer time. So, go go go go. If you are not in too much pain, go.
Beverly L. said:
Ann A. said:
siskiyousis said: