POTS and Cold Weather

[MaryJo]

Hi fellow Potsers!,

Like all of you I suffer very badly when the weather is really hot, but now I am getting a lot of problems when the weather gets really cold. At the moment it is -5 in London, and I am suffering from greater exhaustion, faintness, and also reynauds. The reynauds is despite wearing thick gloves and generally preparing myself for a trip to the Antartic!!!!!!

I don't understand the mechanisms that are at play with POTS and cold weather. In the heat the blood vessels dilate, hence the symptoms, but what is going on with the cold. Surely, if cold leads to constriction of blood vessels then our symptoms should improve? All I know is the problems that I am having, but I don't understand why. I would be really grateful if anyone could explain what is going on.

Also, if you have any tips on the Reynauds, and keeping warm.

Thanks in advance.

Love,

MJ

[Ernie]

HI,

I have to dress in layers and avoid going out when it's below -10C. Here the temperature get to -35C to -40C in January and February.

[Sophia3]

Mary Jo

Do you take a beta blocker? It can worsen the Raynaud's symptoms. I don't have dx of Raynauds but my feet and hands stay cold all the time and more so in winter. I go thru spells where I get so cold my feet and hands can ache until they warm up.

I used to see adds for battery powered socks. My sister saw some recently but they used D batteries which are huge to attach to ankles?!?

Dressing in layers helps the body but nothing helps my toes. I have to work at it. I don't take bb's except tiny doses as needed.

I also wear ear muffs if it's under 40 and my nose can get bouts of being freezing cold as well..even in the house.

We are so temperature sensitive since the hypothalamus controls the homeostasis of the body and regulates the temp of our body. This is why we need AC in summer and access to heat in winter.

Good luck. I like cold weather but not bitter cold. But it helps me if the sun is out. Too much overcast affects my mood AND aches.

[Dizzy Dame]

Part of my dysautonomia is difficulty regulating my core body temperature. My blood vessels, I assume, just don't contract and dialate as they should, so I get overheated easily. Cold weather affects me as well for this reason--I begin to shiver if the weather is colder than 60F, and my feet and hands go numb if I'm in a cold room for too long. Could you have the same problems with body temp?

[ramakentesh]

im particularly bad in the cold - get raynauds and my dizziness in generally worse - i thrive in hot weather and my symptoms always improve - most are the opposite - i do get dizzy sometimes after a hot bath, but when its cold i need them to get rid of the cold hands and feet

[persephone]

Yes- I have this too! I've never been so stiff and sore as I am now--I'm n the UK too, and I'm sure it's linked to the cold.

Part of POTS is being unable to regulated body temp- so your reynauds is prob exaplined by this--I know mine is. I never had renauds before I began fainting.

I don't know WHY it's worse in the cold though. MS is a bit like that- the further north you go, the more sufferers there are. Scotland is esp bad. Although as far as I know there are only 7 of us diagnosed with POTs from Scotland (Felicity is one, so am I- I'd love to meet the other 5!)There must be more than that in England though...maybe they just didn't get diagnosed up there as ther eis no one leading expert on this? Who knows...

!

[MaryJo]

Hi,

Thanks for all your replies.

In response, I am not taking any betablockers or any other meds at the moment. I think that I have a general problem with temperature control. I have EDS and POTS, and the EDS is also a lot worse when it is cold - many more dislocations - - - OUCH!!!!!!!!

I put my central heating up to combat the cold, and woke up feeling drowsy and barely conscious with my heartbeat taking a nose dive of about 40. When I am like this it is dangerous because I am too weak to get up and take extra fluids etc.. I realised that the air had become to dry due to the heat!! How silly I am! It's so hard staying warm, but not getting too hot, so beware with the central heating, and allow some ventilation.

Thanks,

Love,

MJ

[katie_b]

The reason some people get symptomatic in the winter is because the drop in barametric pressure. That's also why some people feel worse before or during a storm.

I am like ramakentesh...I thrive in the summer and barely survive the winter. This year, we're going to Florida to see how the warm weather affects me!