Hi guys once again I need your expertice(I know you get tired of hearing from me) can anyone tell me what is it about the heat that causes Jennas leg pain to be much worse in the summer months?
Hi Jonnell :)
I don't have any medical explanation but I know I used to love the heat and now I hate it. The sun can make us feel ill. I thought the hot flushes were menopausal but I'm through that now and the hot flushes keep coming and they are worse in hot weather. heat just makes me feel more sluggish, lethargic and generally fatigued - so maybe Jenna feels like that too.
My daughter doesn't have SjS but she gets real pains in her bones if she eats too much dairy. She likes ice cream in the summer and quite often ends up unable to sleep. The age she is now - she brings it on herself. Had a bad time whetn she was a kid until we got it figured out.
Take care - Scottie :)
Hi Jonnell!
I don't have an answer to your question, but I know how badly the heat bothers me and seems to make my pain more pronounced many times.
And btw....we never get tired of hearing from you! :)
Hi Jonnell,
I'm with the others, the heat drives my body crazy! I get so weak, and the sweating, oh my, the sweating.
I don't have pain with the heat, just the weakness and sweating. I hate summers now.
Take care -
Patze
Cae I be awkward and say, I love the heat - it makes me feel so much better. My leg pain comes on when I am cold.
Kathyx
See how this affects all of us so differently? :) I guess this is your time of the year coming up then Kathy....I'm glad you get relief for a bit now!
This sjogrens is a crazy crazy thing, isn't it?
Hi Lynnmarie
Yes, t's definitely the Sjogren's that is crazy - not us ;D
Kathyx
Okay Kathy, who you saying ain't crazy? Them's fight'en words!!!! ;) ;D
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Patze
Patze
You doubt my sanity. I think I'm in good company ;D
Kathyx
Hi Kathy,
Nope, not doubting yours, it's mine that's in question. ;D
Patze
Kathy,
I like it real hot for my aching joints (scalding bath every night)....BUUUTTTTT....when I get HOT or overheated, I'm totally miserable! Apparently there is a tiny window of comfort.....it's got to be just right!
The sunshine makes me feel sick and my skin stings terribly.
Janna
PS: I'm sorry to have to tell you BOTH, I have some serious doubts about y'alls sanity!...you too Patze! Sorry.
Luckily, I'm completely normal and can judge how nutty you two are.
Ok...what did I start here??
You all crack me up!
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Heat is often responsible for "Flare Ups" not just the muscle. Sjogren's is an inflamitory type disease, so in heat ,blood vessels dialate, lymph system cirulates more rapidly, chemical reations take place more easily, including antibody circulation and formation. Yes a fairly warm shower helps ,beating on aching mucles and joints, for a while. But my favorite soak in a hot tub is just too much heat I think, I get worse. Maybe try a hot wet rag, sooth with the heat then cool with the evaporation.
Rostradomus, Thank you for that explanation so is it really the sun or the overheating of the body? Ive always tried to keep Jenna out of the sun but it doesnt seem to help much it almost like she doesnt sweat. Her cheeks get beat red and she gets miserable, but if she is in the swimming pool she is okay. Hugs and Kissess Jonnell and Jenna
I'm with Kathyx on this one the heat isn't as bad to me as the cold is...
but I think mine also has to do with the Raynauds...so it is really
hard to say...I don't see as many flares during the summer nor do
I need to take as many IBU, Kathyx do you also have Raynauds?
JJ
Hi JJ
Yes, I do, and peripheral neuropathy. Just wondering which country I could go to live in with a warm climate and healthcare system as good as here in the UK. I don't think I will find that country!
Kathyx
I dread the summer approaching as the heat puts me into a total flare. I feel my best when its cooler.
Well if you find that country let me know...as for Jenna just keeping her as cooled down as possible has got to help
maybe one of those mist blowing fans..i know my granddaughter loves it because its fun but it may help in two
ways for Jenna. I know if i get to hot which is unusual but i like to keep a wet handtowl around and place it on
the back of my neck...i really feel that Sjogrens messes with our thermostats...may go to a heating and cooling place
and see if they will install one in me...lol..Jenna is in my prayers.
JJ
JJ, Thanks for the advice, I think I might send one of those fans with her tomorrow for her trip to zoo. Thanks for the prayers to. Hugs and Kissess Jonnell and Jenna