icesktr189 Posted December 4, 2011 Report Share Posted December 4, 2011 I know we all cant tolerate heat, but my body always freaks out during winter time. I actually do better in summer because I stay cool in my 75 degree house, but even with the heat on now, I feel absolutely terrible.My brain fog increases and bp drops. I have no clue why this happens EVERY single winter for the past 4 years. It stinks. I know exactly when I will flair just by looking at the weather decrease. Its more than weather changes, because this will happen all the way until March.The only thing I can think of is that my body is putting out so much energy to get warm... but I am in my heated house a lot, so that theory does not always work. Quote Link to comment Share on other sites More sharing options...
puppylove Posted December 4, 2011 Report Share Posted December 4, 2011 All my symptoms flare up more often in the winter time too, especially dizziness. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted December 4, 2011 Report Share Posted December 4, 2011 I've thought about the same thing. It is so cold outside and church can get pretty hot (you never know what to expect there), and when DH cranks heat up to shower in morn and then again when he gets home at night I feel like I can't breathe and get lightheaded as I feel the BP dropping. Plus the cold is a killer on my fibro and arthritis. I was at least able to shovel walk and drive last year but that's off my list of things 'too do'. I don't think winter or summer are my friends. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted December 4, 2011 Report Share Posted December 4, 2011 I agree with Ruby I think it's the extremes, we should call it the Goldielocks syndrome........can't be too hot, can't be too cold Quote Link to comment Share on other sites More sharing options...
potsgirl Posted December 4, 2011 Report Share Posted December 4, 2011 Todd,I like it! I'm the same way....extremes either way are no good for me, but I'm especially heat intolerant. Quote Link to comment Share on other sites More sharing options...
Tzipora Posted December 4, 2011 Report Share Posted December 4, 2011 I'm newly diagnosed with POTS but find this discussion interesting. For whatever reason my own BP has been consistently even lower than usual (and I run low all the time anyway) and my brain fog has gotten way worse in the last few weeks (as the weather has also gotten more and more "wintery"). I've been dreading the winter. It makes me never want to leave my house. And it's so hard to go anywhere because I'm extremely cold sensitive yet obviously heat makes me really bad so it's rough trying to figure out the right amount of layers to keep warm but not overheat once I get inside some place.On the other hand, summer wasn't bad for me at all... but then I was also battling major weight loss and severe malnutrition from my Gastroparesis so I was constantly cold all the time. I remember sitting outside wrapped in a blanket on an 80 degree day. I was always cold. No that my nutrition is better though I get night sweats a lot and have been having a lot of heat issues. Seems like we just can't win! I dream of moving to some place with an utterly perfect climate where it's one mild temperature all year round! Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted December 5, 2011 Report Share Posted December 5, 2011 I noticed, too, that I've been having weird(er?) POTS flares since winter started, and I think I realized why! Every time the furnace cuts in at our house (we keep it at 19 C, but when it's super cold out, it cuts in regularly), I become very symptomatic. Does anyone else find that happens? Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted December 5, 2011 Report Share Posted December 5, 2011 I'm not sure if my dizziness is worse during the cold months, but I absolutely hate that I can't get myself warmed up no matter what! My hands and feet are always like blocks of ice, and I have major trouble moving my hands when it's so cold. (I don't know if it's a circulation thing or if I have something else going on with my hands.) Then if I wear gloves or warm socks when it's cold, my hands and feet get really burny and itchy (I think from blood pooling?). It's so annoying, so I'm totally with you on hating winter! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted December 5, 2011 Report Share Posted December 5, 2011 There is a small window of perfect temps for me--roughly 70-75F and that's it. I do much worse in summer, so absolutely hate it. I find it easier to adapt to temps in winter than summer. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted December 5, 2011 Report Share Posted December 5, 2011 I'm not sure if my dizziness is worse during the cold months, but I absolutely hate that I can't get myself warmed up no matter what! My hands and feet are always like blocks of ice, and I have major trouble moving my hands when it's so cold. (I don't know if it's a circulation thing or if I have something else going on with my hands.) Then if I wear gloves or warm socks when it's cold, my hands and feet get really burny and itchy (I think from blood pooling?). It's so annoying, so I'm totally with you on hating winter!I think it's part dysautonomia/part Rxs I take to get the BP up/part bleeding disorder but just feels like ice water is running through my veins when the heater isn't running, but when furnace kicks on it's like poof--I can't breath, I get weak (from vasadilitation I suppose). But I'm not outdoors as much in summer so I haven't been in 'situations' as often as in summer that cause the near syncopes or syncopes. Although I must say, it was really, really warm in church this weekend and even though I've been instructed remain seated through services, I still got very warm and lightheaded, tremory. I carry a fan and cold water with me for when spells might hit since I never what to factor in how heavy a coat I need to wait for car to warm up and going out and about and then how warm it may be inside where I go. If I don't go with heavier coat and it's cold out and cool inside where I go, I chill to the bone and shiver. If it is too warm in the place, and I have to rip the coat off fast and lug it around, I usually end up looking for a bench to sit and wait for DH to gather things needed and check out.This summer before seeing cardiac specialist, I got so debilitated from the super hot days (I love the hummingbirds and flower beds, but the bending and stooping and reaching up--the care needed for those things were sometimes more than my stubborn will could bear). I thought that I would wither and die before ever being seen, honestly. When I had follow-up w/ cardiologist + he'd seen how debilitated I'd become he immediately started me on Midodrine and put call into cardiac specialist who got me in quicker. Now it is scarey for me, too facing this winter with these new problems. I know how I would get very near syncopal in church in summer and in winter but I am more indoors once weather turns cold.When I was working, with my fibro/osteo, office would be 62 or 63 degrees when I came in. Honestly. My rheume told me to dress in layers--silk, cotton or capalein (sp?) and wool. That really did help, but I don't dress that way when I'm in my home. If I'm trying to do housework, I get hot fast and take many breaks, turn heat down. If I do recumbent stationary bike--heat has to be down as I heat up really fast. I have to keep my legs up as much as I can and in cold weather I get out the electric throw DH got me about 10 years ago for Christmas. At least it makes the joints hurt less. Sometimes I'll have heating pad on hip or neck and the electric throw. But then if I go to get up from the sofa--watch out Sally Quote Link to comment Share on other sites More sharing options...
GingerA Posted December 9, 2011 Report Share Posted December 9, 2011 I agree with Ruby I think it's the extremes, we should call it the Goldielocks syndrome........can't be too hot, can't be too cold That is the prefect name! Quote Link to comment Share on other sites More sharing options...
GingerA Posted December 9, 2011 Report Share Posted December 9, 2011 Winter is had always been worse on me and I live in Georgia where it doesn't even snow much. But we do have cold damp air all winter long. My husband is great about watching me. He has learned to put extra blankets on my side of the bed and not to expect much from me until Spring. LOL. What is worse is that the most stress filled holidays are right smack in the middle of winter so I know to clear the calendar for at least two weeks after Christmas! Quote Link to comment Share on other sites More sharing options...
Serbo Posted December 10, 2011 Report Share Posted December 10, 2011 i love winter, but it think because of the EDS have extremely cold hands when i walk at night for a couple of hours, had 2 pairs of gloves on yesterday and still cold!Any EDSers or people with cold hands recommend a winterproof glove? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 10, 2011 Report Share Posted December 10, 2011 I love winter too... yes, my hands often turn blue, but my body, overall, enjoys the cold. As for gloves--the only thing I've found to help were ones that are line with polar fleece and covered with goretex.... I got them from Lands End a few years ago. I heat them with my hairdryer inside before I go out. Other than that, my extremities often do turn blue to purple depending on the temp and how long I'm exposed to low temps.Nina Quote Link to comment Share on other sites More sharing options...
Serbo Posted December 10, 2011 Report Share Posted December 10, 2011 thanks Nina, was thinking of something like these, but the goretex fleece lined might be better!http://www.orvis.co.uk/store/product.aspx?pf_id=3P5C&dir_id=466&group_id=488&cat_id=8540&subcat_id=6986 Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 11, 2011 Report Share Posted December 11, 2011 these are close to what I have, but I didn't pay nearly as much as the gloves on REI --although I have bought plenty of other things from them.http://www.rei.com/search?search=goretex+gloves&origin=Google&scv_page_size=109&seq=1&hist=search%2Cgoretex+glovesIf I had to do it again, I'd get the mittens--these are close to what I got, not exactly though.http://www.landsend.com/ix/index.html?search=gore+tex+gloves&store=le&action=newSearch Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 11, 2011 Author Report Share Posted December 11, 2011 I think its the drastic change of weather also. In AZ I literally used the Ac one day and the heater the next.. the temps are crazy over here. It was hot today and I needed the AC in the car, when just yesterday it was so cold that I could only stay at the park with my daughter for a couple mins. Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 11, 2011 Report Share Posted December 11, 2011 Hi,Winter is difficult because I have to wear heavy boots and a heavy coat because it get to -40F here. Then when I sweat I need to change cloth if I go outside otherwise I catch a cold.The worst seasons for me are the chaging season: spring and fall. But after the temperature has changed my body is fine. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 11, 2011 Author Report Share Posted December 11, 2011 Technically the my body does better in the changing seasons because its more of a decent temp, but then my allergies really start going. Then summer comes with the 115 degree heats and the winters I dont do well, so I never really catch a break.Summer is my best though because I just stay in the AC all summer. Quote Link to comment Share on other sites More sharing options...
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