MPN Voice
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Does anyone feel like they're hot when others are comfortable?

I feel like I'm on fire when I'm sitting in the air conditioning. Being outside this summer is miserable.

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I would say that I am less tolerant of the heat than I was. I have struggled to walk the dogs when it has been hot and always make sure I drink a lot of water whilst out otherwise I end up with a migraine.

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Yes just as ruby says. I think it is pretty normal for people with MPDs. I have PV. I'm always throwing off the bedclothes when my partner is tucked up in the quilt. We were living in the mountains in Spain - where the Spanish go in their holidays for cooler weather - but I can't cope with summer there, so we're now in France. I take it easy in hot weather and drink plenty of water.

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yes I have problems with the hot weather my face starts to burn up after work i try to wear a hat and i also have problems in the cold weather hands and feet very cold

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Most definitely feel the heat more. I have a fan on in the bedroom summer AND winter . Light downie that usually gets thrown off. If I overheat I tend to have nightmares. Not nice at all. With my Red hair and Red skin I look like a Tomato.

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Hi. I have pv too and have definitely morphed from someone who huddled in front of the fire to another person! I now prefer to sit in an unheated room, can t stand hot sun or temperatures higher than about 22 degrees, and sleep under a pure cotton 4.5 tog duvet (available from DAPW.co.uk) whilst husband has another layer on top.

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I must say my experience is quite different. I can no longer tolerate the cold and wet. It is winter here now (Australia) and the only way I can either not feel cold or have pruritus is is to rug up. Its 20 deg Celsius inside (5 outside) now but I am wearing triple trousers , a jumper polar fleece and a jacket etc I dream of when it will return to a summery 25 to 30 deg. And luckily, I suppose ,I don't get night sweats

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yes I get incredibly hot especially when exerting myself , i try to wear as few as clothes as possible. Not always easy as town crier

chris

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I am not tolerant to heat any longer and any in the heat it is very uncomfortable and sweaty, not a good look at all.

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Yes I am always hot and suffer from excessive sweating from the head when i get too hot.........nice!!! but have learnt to control this by keeping my feet cool, oddly?!!! I live in t-shirts and flip flops and winter is a constant battle of the thermostat with my hubby who is forever cranking it up.

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I get both too hot and too cold and often go from one extreme to the other very rapidly!

My hands and feet are particularly prone to getting very cold......

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I have had PRV for six years and have had several symptom changes. Itch is the worst, brought on by perspiration from cooling down, or getting too warm while it is cold out. Managing my environment is always a challenge. Drinking a cup of tea or coffee makes my body temp shoot up and I have to strip off or go outside. Water on my torso or limbs brings itch big time! Almost never bathe now, which I hate not being able to do.

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Quite a diversity of experiences here, but the common theme it seems, is that temp changes are problematic for us as a group. To get a rare bath I use Aveeno, but it doesn't help much and I have to expect itch for 30-45 minutes. Seems like self-torture. Luckily, for some reason I can wash the essential bits without itch there -- at least for now!

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Yes I suffer from being too hot at night particularly. I beleave that it is onne of the effects of the condition. However I do not seem to be affected by the ambient temperature. I travel to India and Queensland Australia quite frequently and both of these places can have very high temperatures, even at night.

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Initially I used to feel that it was due to the menopause and could not work out what was going on! But then that does not apply to all of us....

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Mine started after I started on the med, Hydrea. I thought it was early menopause since that can happen on this med but my periods are still like clockwork. I used too love summer. This is the first year I can't wait for fall.

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I took Hydroxyura for 3 years but am now on Anagrelide as I was getting anaemic with Hydrea. I seem to be OK on the minimum dose of 1 a day and my count at present is 380.

I was diagnosed with ET in 2003 but when they checked my med. records said the count was high since 1993, but was not noticed....stayed steadily around 500+ since and I started feeling nausea once they reached 640...in 2003....that was when bloods tests were done to confirm it was ET. Have all sorts happening at same time....diabetes, BP, menopause, etc. so am really trying to keep my head above water....

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Yes I have terrible trouble with the heat. I go light headed and feel as I am going to pss out. If I think plenty it is just about manageable. Get hot at night and very often sleep with one leg outside the covers trying to keep cool. Everbody keeps asking me iif I don't feel the cold as I walk round in a short sleve shirt whilst others have coats on. Thought it wa just me. Prefer a temp in top teens/bottom twenties with a coll bereeze. Hate to say it but I hate the hot weather. In fact my haematologist told me to be very careful in the hot weather and she was right!!

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yes I get very hot especially after exerting myself really overheat, I also sleep with my feet and legs out of the covers where as my hubby has a extra blanket.

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Alrow , may I ask a question? When you speak of going to Queensland has that been in summer or winter (ie during the dry or wet?) I have mused about going to Queensland in winter, but the the thought of the humid heat of summer is daunting. I have wondered if I-we have a closing window of a comfortable or tolerable air temperature range.

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I'm so glad this question was asked and even more glad that so many have answered, I thought it was just me having a nightmare trying to regulate my temperature. It can really get me down. It took years for docs to diagnose me and even now they are determined to put everything down to menopause even though all the women I know don't experience any of the stuff I do.

So yes, all the same kind of symptoms as above, really hot and cold in bed, on a hot summer day sweating and then my hands and feet swell up and I'm constantly struggling to stay hydrated. In the winter I don't have the heating on in my bedroom.

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I cannot work put whether it is the menopause or ET. It is so bad at times but so unpredictable. Have tried sage and soya isoflavones for menopause which help but as they do not get rid of it I assume the rest is due to my ET

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Hi folks I have Prv for 12 years been on hydrox and aspirin for 12 years also 34 when I found out. a couple of things which help me drink loads of liquids keep well hydrated I drink anything tea coffe cola water orange just make Shure you keep at it I shower twice a day every day just warm water not hot very small amount of gel or shampoo 5 mins max I find the itch is very mild lasts for 10 mins then I forget about it from my experience soaps etc make it worse a little bit goes a long way hope this helps

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I too get so hot and uncomfortable even without any exertion, i can be watching tv and start melting, and i live in Scotland! I go to bed at night and have to stay as far away as possible from my husband because the heat from his body just makes me worse, oh my, this is sounding awful saucy eh hahaha but you know what i mean.

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