I do better in the cold!

[Cort]

I don't know why...I don't particularly like the cold - I don't look forward to it but when it gets into the 40's or so I do better. I am very clear about that now. I can walk much further without problems....It's the weirdest thing.

Maybe I should live in Alaska...Unfortunately I don't well with natural gas (although I have improved greatly) and need the windows open for MCS - so it can't be too cold....

 

[SOC]

Could it be a POTS/OI issue?

 

[sickness]

I definitely do better when it's cooler, energy wise at least. It's summer here in Oz, and suddenly I can't be upright for any length of time. I'm just useless right now. I think it is related to Pots. Funny thing though, I usually have more pain and feel sicker when there is wintery weather. Go figure!
Take care, ness

 

[anncavan]

I'm the same way too! Both heat and humidity give me fibro flare ups! Also when a high pressure front is coming in, I feel it well before the rain or drastic change in temp.

 

[ukxmrv]

I'm the same (I think). It's not the absence of heat as it needs to be cold enough to trigger off this good effect. The current snow in the UK has been ideal.

When the temperature drops I can suddenly start to walk further and stand better. It does need to be very cold though - around the 0c mark for me but the colder the better. Extended periods of very cold weather are ideal for me.

I'd always assumed that it was blood pressure/blood vessel related? Once I had a POTS test with a holter type monitor in cold weather and in a cold room. The surprise for me was that the POTS was still really bad. Maybe something near to that but not exactly?

 

[Wonko]

every year previous to this one I've been much better in the cold, but this year the cold has made me completely housebound and skint as for some reason I cant tolerate it at all.

 

[Merry]

Cooler is better. Plus I love to watch the snow coming down.

 

[lucy]

Same here. I try to avoid hot environments (it is for example usually very hot in airports) as much as possible. I noticed that my blood veins become extremely enlarged, all the skin feels very warm. I am better if I drink coffee, which narrows the veins. So I hate heat, even though I am also very sensitive to cold, I have raynnaud's, which recently became more active with lots of swelling in my toes. My guess is that in ME/CFS bloodvessel enlargement (they call it vasodilation?) is to be avoided, as there is a mechanism which regulates vasodilation, and it involves gases such as nitric oxide. Also, if one gets wider blood vessels, the blood pressure drops, therefore ortostatic intolerance is possible.

 

[helen41]

cooler is better. My head feels better and my legs have more strength. It has happened a few times in the heat that I bend over or squat, fall, and can't stand back up. I have to slide myself along the floor to some stairs where I can get back to my feet. So graceful. It's much better in the cold.

 

[Cloud]

Yep same here, as the temp goes up, my stress tolerance goes down. I can push the stress boundaries much farther in cool climates and will set off PEM much easier in warm. I had to give up my favorite getaway activity....hot springs. No more hot tubs either. MS is the same....stress or heat will often cause exacerbation's. I live in very temperate climate here on the ocean which works best for me.

 

[Stone]

Maybe it's because the cold temperature causes our bodies to tend to keep more blood in our 'core' and less in the extremities. Since people with our disease generally have a lower blood volume than 'normies', maybe our brains are enjoying a little more blood and oxygen in them. Just an hypothesis.

 

[helen41]

Yep same here, as the temp goes up, my stress tolerance goes down. I can push the stress boundaries much farther in cool climates and will set off PEM much easier in warm. I had to give up my favorite getaway activity....hot springs. No more hot tubs either. MS is the same....stress or heat will often cause exacerbation's. I live in very temperate climate here on the ocean which works best for me.

I got stuck in the tub twice and no longer take baths. That used to be a diagnostic tool for MS- put someone in a hot tub and if they couldn't get out, it was a confirmation of MS. I have numerous little lesions, but not located in MS areas. There does seem to be a lot of overlap between the 2 diseases.

 

[CBS]

Inflammation?

Wouldn't the cold help with inflammation? That's always been my take on doing so poorly when its hot; inflammation and the increased metabolic demands of cooling the body.

 

[Sallysblooms]

I have always felt better in cool and cold weather. Even in childhood. Now with the CFS and POTS it is very important to stay cool.

 

[L'engle]

I tend to like cooler as well. Above 20c/70f is uncomfortable and causes OI/POTS. Healthy people are quick to tell me in winter that I will feel better in summer. I assure them that I feel worse in hot weather. Also I have very bad sun sensitivity which may be autoimmune in origin so summer is a stressful time of trying to keep the sun off my face. (My vitamin D levels are fine). Only thing I don't like about the winter is it's easier to get a cold, about once a year for me.

A theory maybe folks more on the neurological side do better in cold, more on the immune symptoms side better in the heat. No idea, just a guess.

 

[floydguy]

I'll chime in as the contrarian. I am cold under 75. I function best between 80-85 in the east and 80-95 in the desert. I'll take hot over cold any day. My body temp is stuck at 96. I don't have light sensitivity so I am fine in the sun. I do have sound sensitivity. Climate wise I would be happiest where the weather stays about 85 -87 year round like areas of the South Pacific.

 

[IntuneJune]

We live in New England, so of course, it is cold here. Oil is expensive, for the past 40 years, we have kept our house at 65 during the day during the heating season. I have never been comfortable during the summer. But, really I don't know why. If I am at the ocean, I am better.

Yesterday, I went to a hospital infusion center for my monthly infusion. I went from home to the center. While the infusion nurse was setting up, I was relaxing in my chair. Then I had a tickle in my throat, I coughed. It got worse, I coughed more, it got worse. I got up and went to the water dispenser and sipped water from a cup, I was worse. Now the coughing brought the attention of a number of nurses, and they came to me......"put your arms over your head, the water went down the wrong way, etc " I was trying to tell them, "No I was coughing BEFORE the water." But I could not talk. I tried and tried to take a deep breath, could not...... I led one of the nurses to the door leading outside, and gestured I needed to go out.... she understood and came with me.

It was quite awhile before I could breathe without coughing and a sensation that the right side of my throat was spasming. It was scary, I thougt I bought the farm.

After discussion, the nurse stated she thought it was the dry heated air in the infusion lab.

When I am in the car, I must be careful to not overheat the car, I cannot breathe....

In the heat and humid air, I wilt.

In the hot dry air, my sinuses dry out and even though I can move air in and out, I feel oxygen-deprived.

In the cooler air, I can breathe easy.

Cooler temperatures though make my muscles tense. This tension causes pain.

Geeeezzzzz

No place to go....no place to be.

Fondly, June

Edit: Should mention, I also have Sjogren's Syndrome which would contribute to the symptoms above.

 

[SOC]

Also I have very bad sun sensitivity which may be autoimmune in origin so summer is a stressful time of trying to keep the sun off my face. (My vitamin D levels are fine). Only thing I don't like about the winter is it's easier to get a cold, about once a year for me.

I'm a lot like this. I have the sun sensitivity, which means covering up head-to-toe (nearly) in the summer. Add to that the fact that heat exacerbates other symptoms, the hot, humid summers here are a misery. I don't have severe POTS symptoms, though.

My daughter gets POTS symptoms in the heat. She can handle Florida in the winter, for example, but not in the summer. She gets what Dr Lerner calls "pre-syncope" in the heat. She feels better in the cool/cold weather, but I think it's more accurate to say that she feels worse in the heat. Florinef, K-Dur, and support socks have helped her cope with those symptoms.

 

[silvermaneuk]

I dont do well in the cold at all, I get more chest problems, my immunity is a lot lot worse in the winter, I flare a lot more, but I do have Raynauds and Hypothyroidism, both, which dont like the cold at all. I dont do well in extreme med heat, but UK isnt too bad, and tbh I find a relief from some of my symptoms when the weather is warm (not hot). I dread the winter, although I love the cosyness of it, just hate how I end up ill all the time. Like I got a sinus cold thats lasted 3 weeks and then got Bells Palsy as a consequence. Before that I had a bad cold that turned into bronchitis and now I have asthma. Show's how different we all can be I guess.

 

[chili]

I can make some of my symptoms 50% better with cold, in fact, since the first month of my illness I will do anything to cool down my head, which feels blazing by afternoon and evening. Cooling methods have included taking short walks when it's cold outside, applying ice bags to my head, and taking cool showers. There is no doubt in my mind that cooling decreases my cognitive symptoms. My theory is that cooling decreases CNS inflammation. I believe my often low body core temp is BEHAVIORAL, because when I wake up in the morning I am closest (but rarely at) 98.6.