Author Topic: Does the summer heat affect those with sjogren's?  (Read 401 times)

wildflower

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Does the summer heat affect those with sjogren's?
« on: July 05, 2018, 08:57:40 AM »
I have been having a terrible time with the heat for the past week. It's been in the high 80's and 90's. I feel weak and short of breath after I've been outside. Also, my sinuses are giving me fits! Does anybody else have this problem?

Skylar

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Re: Does the summer heat affect those with sjogren's?
« Reply #1 on: July 05, 2018, 04:52:05 PM »
Very common among us sufferers - it's as though the heat is sucking out our energy leaving us weaker. If you have to be outside - avoid direct sunlight - stay in the shade.

Some medications make you more sensitive to UV light -sun-sensitizing drugs (photosensitivity) can cause a moderate to severe skin reaction that is similar to a bad sunburn. Wear sun screen and clothes that block UV light as well as a hat.

Check your local weather for air advisory warnings - poor quality air can affect how your lungs feel as well as breathing and sinuses.

Joe S.

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Re: Does the summer heat affect those with sjogren's?
« Reply #2 on: July 05, 2018, 04:56:10 PM »
Yes, all of the above. UV sun light can also be a problem. I have SPF 50 clothing that I wear day and night. I also wear a big floppy hat and SPF 50 sunscreen lotion. On mu trip (5 days of 10+ hours each) I will also bring a sun blocking blanket to cover up while in the car. I have tha AC vent blow under the blanket.
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irish

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Re: Does the summer heat affect those with sjogren's?
« Reply #3 on: July 05, 2018, 08:28:29 PM »
The heat and humidity raise havoc with those of us with autoimmune disease.Our thermostat doesn't manage out body temp very well so we have problems with getting overheated. The humidity makes it worse. Also the humidity bothers the sinuses and the air conditioner can dry out the air in our homes enough to make our lungs and sinuses more dry. Too many changes adjusting and trying to stay healthy.

I just lay low in the summer and save my house work, etc till after supper when it cools down some. My favorite time of the year is fall and I have to admit that I don't mind winter cause I feel more well in the cold air. Take care. Be sure to keep your arms and legs covered to protect from the sun. Alao, I learned the hard way that in spite of sun glasses a person can really get miserable eyes sitting at the lake and staring at the water. Ii learned to turn my back to the water and I carry a bath towel to place over my legs to protect from the sun. Even being ever so careful I can go homes from the lake after not many hours and enjoy the presence of a flare for the next 2-3 days. We pay for our pleasures at times. Good luck. Irish

araminta

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Re: Does the summer heat affect those with sjogren's?
« Reply #4 on: July 06, 2018, 04:20:21 AM »
We are having a phenomenal heat wave in the UK at present, and yes I feel more drained than usual.   It looks so inviting outside but I stay in most of the time.
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

trejonina

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Re: Does the summer heat affect those with sjogren's?
« Reply #5 on: July 06, 2018, 09:36:18 AM »
Hi, I completly agree with what Skylar and Irish wrote about how badly heat affects us !!!

happylife

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Re: Does the summer heat affect those with sjogren's?
« Reply #6 on: July 07, 2018, 12:05:16 AM »
If i go out in the sun during summer, within few minutes i start feeling fatigue.

And once i return to shade it takes 1 or 2 hours for me to feel normal.

wendyoh

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Re: Does the summer heat affect those with sjogren's?
« Reply #7 on: July 09, 2018, 04:09:55 AM »
yep--what they said
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not trained in medical field so just share my experience and opinions as a consumer and lay researcher trying to get more well-ness

Liz D.

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Re: Does the summer heat affect those with sjogren's?
« Reply #8 on: July 09, 2018, 06:04:56 AM »
Same here!

Liz D.
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lorigacc

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Re: Does the summer heat affect those with sjogren's?
« Reply #9 on: July 09, 2018, 06:56:06 AM »
ditto
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SjoGirl

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Re: Does the summer heat affect those with sjogren's?
« Reply #10 on: July 09, 2018, 12:35:40 PM »
"Our thermostat doesn't manage out body temp very well so we have problems with getting overheated"

Some have central nervous system involvement with SjS and yes, that wreaks havoc with regard to heat (cold too). I for one don't sweat much anymore which can quickly lead me to suffer from heat stroke even faster than the average person. My advice, stay in when it's hot, if you have to go out consider purchasing something like a Frog Tog, which is a piece of fabric that holds water. You can wear the Tog around your neck or use it to wipe yourself down, it's a life saver.
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Kathy57

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Re: Does the summer heat affect those with sjogren's?
« Reply #11 on: July 09, 2018, 09:00:48 PM »
Hi all! 

I haven?t been here for awhile but I kind of like the humidity.  I feel so dry in the air conditioning and the forced heat during winter.  Whenever I can, I try to turn off the air and open the windows.  My sinuses actually feel better with some humidity.

We went to Punta Cana for my neice?s Destination wedding and my sinuses felt great in the salty air.  The breeze of the ocean felt great.  I don?t like the heat and I do turn on the air when I need to.  I hate the winter most of all.  I do think my sinuses are really bad due to a terrible sinus surgery that I wish I never had!

I agree that the heat saps all your strength and I would hate to live without air conditioning.

Kathy
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer

Carolina

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Re: Does the summer heat affect those with sjogren's?
« Reply #12 on: July 10, 2018, 08:35:27 AM »
I used to love the sun and love the heat.  Hours in the sun, with a book, and a glass of iced tea, next to the pool was my idea of heaven.

That changed about 10 years ago....maybe more like 8.  I have temperature dysregulation which means for me means I'm always too hot.  And for many of the past 8 years I had sweat pouring down my face, even indoors in AC.   And I cannot bear the heat and humidity we have now in NC.  What would I do without AC, set at 71.

And sunlight on my skin can often sting, which shocked me when it first happened.  Now nothing much shocks me (for sure something WILL shock me soon, I bet!).

I like to see the sun shining out my floor to ceiling wall of windows in my bedroom.  And I wish I could sunbathe again.  But it is not to be.

Regards,  Elaine
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Linda196

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Re: Does the summer heat affect those with sjogren's?
« Reply #13 on: July 11, 2018, 06:09:50 AM »
This is part of my reply on another thread about UV exposure and flares, but it fits here as well:

(Plaquenil)basically alters the immune response to UV light, either way, and I'm lucky in that, after a lifelong of burning easily and frequent bouts of sun stroke, I've been much more tolerant of the sun since starting on Plaquenil! I'm still very careful about exposure, and do occasionally get a rash from direct prolonged exposure, but other than that, it's been a good change.

My problem with the sun and heat is, since being on Prednisone almost continuously for 14 years, I no longer have the adrenal "fight or flight " response to stress while I'm taking my daily dose,and heat is a strong physical stressor. As a result, on the almost rare times that we experience a true heat wave (the joy of the Great White North) I have to stress dose my Prednisone. It usually only happens a few days in August, but this year has been exceptional for extreme weather, and I've had to do so twice already this summer.
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Joe S.

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Re: Does the summer heat affect those with sjogren's?
« Reply #14 on: July 11, 2018, 06:59:33 PM »
On the way home from Fargo, we stopped at the rest stop in Moorhead. The lady parked next to me opened her door and pulled out a sun cover jacket and put it on. She climbed into her car and pulled a sunblock over her lap. She put on dark glasses. Then she put on opera gloves.

I thought to myself, "Gee, she might have Sjogren's."
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
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