I have noticed that heat makes all my symptoms worse. Not sun, because I do all my outside stuff (yard work, walk, etc.) before the sun gets high enough to shine on me. But I have noticed that when it is really hot out, I get worse (even when I don’t go outside.) We had had a relatively cool summer up until the third week of July and I was doing okay. But then we started getting the scorching hot weather and I went downhill fast. I don’t understand this. But I know that last summer (which was before my diagnosis) was horrible for me. I barely got,out of bed all summer. I keep looking at the calendar and thinking “just a few weeks until it cools down” but I don’t want to spend the next few weeks in bed. (Yes, I am whining!) My husband keeps our air conditioning on 72degrees so the inside temp is not the problem. Help!
Heat affects me the same way. Last summer was absolutely horrible for me and I was working in a warehouse in the heat at the time. That is when I was diagnosed. Even the heat from too long of a shower will increase my fatigue. My husband enjoys the steam bath at the gym, and I can't even stand to open the door and stick my head in.
We have had unseasonably mild temperatures where I live for the past 4 weeks. It was 49~ this morning! I have learned that if I am going to be able to return to work, it has to be in an office setting.
Hi MBPP - Like you (and I am in FL), the heat, whether the sun or even internal heat when I overdo, totally exhausts me. So I stay inside, as well. The opposite side of the coin is I also get bouts of being extremely cold no matter the temperature (where nothing warms you) ... we are a strange lot :). Hugs, Dee
I try and stay hydrated and go out early of a morning or late in the evening. The fatigue is terrible during the summer a midday nap helps some. Trisha if it had been 49 here this morning I think I would have tried to do a little dance. for some reason I always do better in the fall and winter even with my fibro and arthritis.
Be careful of the heat…the heat causes vasculitis. …meaning your vessels swell along with everything else…this puts increase blood flow throughout your body…don’t get over heated…makes my heart crazy fast beat…my face gets super red and swollen…the stress makes my sugar dive into 60s…just be careful…good luck
Trisha, I would have been so very happy to have 49 degree temps. I find it easier to warm up than to cool down. It has been cooler than normal here this summer and I feel fortunate for that. Last year was hotter than normal and I spent the whole spring and summer I side and in bed. I did t have a diagnosis at that time and was not on the mess I am on now so that contributed to my misery also.
I have not worked in over two years. At first it was just be wise I couldn’t find a job. Now I don’t think I could keep a job with my health issues. I am still hopeful that the plaquenil will work and I can go back to work. Have a great day.
Trisha said:
Hi MBPP
Heat affects me the same way. Last summer was absolutely horrible for me and I was working in a warehouse in the heat at the time. That is when I was diagnosed. Even the heat from too long of a shower will increase my fatigue. My husband enjoys the steam bath at the gym, and I can't even stand to open the door and stick my head in.
We have had unseasonably mild temperatures where I live for the past 4 weeks. It was 49~ this morning! I have learned that if I am going to be able to return to work, it has to be in an office setting.
Tootles, where in Florida do you live? I am in south Alabama, 90 miles north of Panama City. I love the beach but haven’t been in a couple of years because I can’t tolerate the trip. I tend to stay I side a
Lot myself but I hate it because there is so much to do and enjoy outside. Like I always say, it is what it is. I has learned to do the best I can and try not to beat myself up too much. It will be fall soon and I can gt back out more. Hugs, MB
Tootles said:
Hi MBPP - Like you (and I am in FL), the heat, whether the sun or even internal heat when I overdo, totally exhausts me. So I stay inside, as well. The opposite side of the coin is I also get bouts of being extremely cold no matter the temperature (where nothing warms you) ... we are a strange lot :). Hugs, Dee
I rest every afternoon (and sometimes all day). I used to LOVE taking naps (which was very rare for me) but I hate being forced to rest so much now. Too bad I can’t afford a summer home in somewhere like Canada where it never gets too hot.
purplebutterfly said:
I try and stay hydrated and go out early of a morning or late in the evening. The fatigue is terrible during the summer a midday nap helps some. Trisha if it had been 49 here this morning I think I would have tried to do a little dance. for some reason I always do better in the fall and winter even with my fibro and arthritis.
How do you know you have vasculitis? Is it just because of the symptoms? What you Re describing g is exactly how I feel when I get hot. When I get that feeli g of my blood sugar taking a nose dive, it is scary and doesn’t seem to be related to my diet. I am still learning and I appreciate you and everyone else for the help.
awesomed said:
Be careful of the heat…the heat causes vasculitis. …meaning your vessels swell along with everything else…this puts increase blood flow throughout your body…don’t get over heated…makes my heart crazy fast beat…my face gets super red and swollen…the stress makes my sugar dive into 60s…just be careful…good luck
I also take the sunrise I to a CPU t. I try to finish everything I have to do outside before 8 am. I have always been an early riser so it is comi g in handy now. The oh days I am usually out later than 8 are when I mow the grass because t takes me a little longer with all the breaks I take. I am ready for fall and winter! A d I am a beach, pool, outside girl. Yes, this MCTD is a cruel ill was. Have a great day.
Ann A. said:
This year I have become so sensitive to UV that I must constantly remind myself that it is invisible to the human eye. Just because I cannot see the UV does not mean that UV photons are not bombarding me. A few years ago someone bought me a UV sensitive t-shirt. It has been helpful.
My adjustment this year has involved taking sunrise and sunset into account. Where I live it rose at 6:26am and it will set at 8:01.
MBPP I live in Mount Dora (kind of middle of the state); was born in Birmingham, though, and would love to go back to Alabama. I am not that far from you :). I, too, love the beach (although I would likely be mistaken for a beached whale now :) ...), but have not been because of the heat. I was actually thinking about getting one of those tent things they use, have my husband set it up for me and he can fish or whatever.... The ocean is just so relaxing (especially the Atlantic side with the waves). I have lived here most of my life (since age 2) - and since all of this, I miss the beach the most.
MBPP said:
Tootles, where in Florida do you live? I am in south Alabama, 90 miles north of Panama City. I love the beach but haven't been in a couple of years because I can't tolerate the trip. I tend to stay I side a Lot myself but I hate it because there is so much to do and enjoy outside. Like I always say, it is what it is. I has learned to do the best I can and try not to beat myself up too much. It will be fall soon and I can gt back out more. Hugs, MB
Tootles said:
Hi MBPP - Like you (and I am in FL), the heat, whether the sun or even internal heat when I overdo, totally exhausts me. So I stay inside, as well. The opposite side of the coin is I also get bouts of being extremely cold no matter the temperature (where nothing warms you) ... we are a strange lot :). Hugs, Dee
Heat just makes my whole central nervous system short-circuit, making all of my pain worse, and affecting my breathing, heart rate, and so many other symptoms.
are you only working early in am or late in day/evening? Most of us lupus people can have hard time in sun during high sun portion of day. BUT i still have much harder time in winter with very cold weather plus removing snow, wood chopping etc. Much more strennous work for me that must be done no matter how exhausted i am.
Now in summer if start to feel bad i can leave the lawn or flower beds, weeds etc.....i rather feel well than hurt or be sick. But in winter i cannot get the car/truck out if snow is in the way and house does not have heat without fire. SO much worse for me...at least.
OOOH 72 is way too cool for me...if it over 90 outside and i go in and out....i always got sick in work places that kept it that cool or did cause a lot of pain for me. I did much better dealing with the heat or moving thermostat at high 70's...might try this as easy cure.
I also got bronchitis almost every summer when working in office that kept it that cool but outside was over 100 often. Dry heat not humid so not as bad but still difference really played havoc with my body and joints.
I also think something about air especially in cars that just does not agree with me....i get stuffy and first signs of flare coming on if people want to use it when just in 70's or i am freezing still from the office temperatures.
Heat bothers me but humidity is worse. We had monsoon weather with high humidity for several mos & I felt horrible. I can't stay out in heat long. My joints hurt & I feel fatigued. I do better in cool weather but not cold. If it was 70's all the time I'd feel great. Not sure why heat bothers us, I think it revs up the immune system.
Both sides of the coins my body cannot stand: too hot or too cold. My thermostat stays in the 60's (Tampa, FL) but I still favor the cold. My father used to say that if he's cold, there are always more clothes to put on, but when it's hot, he runs out of clothes to take off. Ha!
Hi Siskiyousis, yes, I do all my outside work it the morning. I am usually done by 7 or 8. I start with a walk around 5 and then do a little yard work or whatever needs to be done outside. My yard needs to be mowed but I didn’t have the strength this morning. It is really humid and we are expecting a LOT of rain (flash flood watches in effect.) But even if I stay inside all day, summer time is still harder for me.
We don’t get that much really cold weather here. It gets cold enough to bundle up but not too much deep freeze type weather. I always have more energy once the temps cool off and the humidity gets lower. As far as the air conditioning in our house, it is a battle that I can’t win. I turn the thermostat to 76, my husband turns it to 70. There are mornings that I wake up freezing cold and I find the thermostat on 66. My husband drinks a lot and he sweats a lot so I guess he is hot all the time. I just put on socks and blankets.
In he winter, I have a heated mattress pad. It cost about $100 but it is so worth it. I got mine at Bed, Bath and Beyond. It has dual controls so if you share a bed, each person can control their side.
Thank you for your insights. Have a great day.
siskiyousis said:
are you only working early in am or late in day/evening? Most of us lupus people can have hard time in sun during high sun portion of day. BUT i still have much harder time in winter with very cold weather plus removing snow, wood chopping etc. Much more strennous work for me that must be done no matter how exhausted i am.
Now in summer if start to feel bad i can leave the lawn or flower beds, weeds etc…i rather feel well than hurt or be sick. But in winter i cannot get the car/truck out if snow is in the way and house does not have heat without fire. SO much worse for me…at least.
OOOH 72 is way too cool for me…if it over 90 outside and i go in and out…i always got sick in work places that kept it that cool or did cause a lot of pain for me. I did much better dealing with the heat or moving thermostat at high 70’s…might try this as easy cure.
I also got bronchitis almost every summer when working in office that kept it that cool but outside was over 100 often. Dry heat not humid so not as bad but still difference really played havoc with my body and joints.
I also think something about air especially in cars that just does not agree with me…i get stuffy and first signs of flare coming on if people want to use it when just in 70’s or i am freezing still from the office temperatures.
I wish someone could tell us why the heat bothers us so much. If “they” knew why, maybe they could fix it, or at least make it better. Have a great day.
OC GAL said:
Heat bothers me but humidity is worse. We had monsoon weather with high humidity for several mos & I felt horrible. I can’t stay out in heat long. My joints hurt & I feel fatigued. I do better in cool weather but not cold. If it was 70’s all the time I’d feel great. Not sure why heat bothers us, I think it revs up the immune system.
Your dad is so right- you do run out of clothes to take off. And no one wants to see this body without clothes on. LOL
Latina said:
Both sides of the coins my body cannot stand: too hot or too cold. My thermostat stays in the 60’s (Tampa, FL) but I still favor the cold. My father used to say that if he’s cold, there are always more clothes to put on, but when it’s hot, he runs out of clothes to take off. Ha!