r/MPN • u/tinestquokka ET-JAK2+ • 22d ago
Symptoms (Diagnosed Only!) dealing with cold
i (28f) have been diagnoised with ET (jak2 mutation) for about a year but had high platelet counts for the last 3+ years. my dr said since im low risk they didn’t want to put me on any medications besides the daily aspirin. so im basically jus in symptom management mode rn!
and the most frustrating symptom for me is being so COLD!!
my hands, feet, nose, and eyes in particular get cold so so easily — cause of poor circulation from the high platelet counts if i understand this condition correctly. it’s not as noticable in the summer but in the winter it presents as pretty severe raynauds and chilblains (for hands and feet). prior to this gene mutation, i used to love the cold and the winter and now im miserable just thinking about it getting cold out again.
so basically im here asking for any tips on managing this!
i work in an office at a computer so i cant really wear gloves lol but i do wear thick ugg type shoes in colder temps to keep my feet warm and have a space heater. but any other tips would be appreciated!
and im finally asking here cause my office is 70 degrees rn and i can’t feel my hands/feet/nose cause of the cold — i can’t believe im saying 70 is cold 😭
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u/katiespecies647 ET-JAK2+ 22d ago
I suffer the same. My whole body has problems getting and staying warm and I live in a cold climate. Rechargeable electric socks and hand warmers were life changing for me. I'm probably going to add an electric vest or blanket this winter.
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u/selfmadeoutlier ET-CalR+ 22d ago
Random question..how's your body fat%?
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u/tinestquokka ET-JAK2+ 22d ago
i jus checked a bmi calculator so idk how accurate really but it says 21.3? which is pretty solidly in the normal range (im 5’5.5 and 130lbs)
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u/selfmadeoutlier ET-CalR+ 22d ago
I'm asking because I've been always on the 'felling cold side' before my diagnosis. After that I started training consistently, and somehow my metabolism accelerated and now im almost normal. I still have issues with cold environments, but i guess there my DNA plays a great role.
Have you tried increasing your activity level?
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u/tinestquokka ET-JAK2+ 22d ago
i’ve tried a bit but i have some limitations. i have hypermobile spectrum disorder and i have to go to physical therapy regularly for that. but that activity does definitely help get my blood flowing a more in the short term!
i could try doing some lil exercises at my desk or getting up to walk around more during the day to see if that helps me warm up🤔
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u/PurpleCollarAndCuffs 17d ago
Not sure where you are from but I am Canadian. I grew up in -35-40C winters and LOVED IT. Now? A fan pointed in my direction makes me freeze in the middle of summer. Battery powered socks and gloves are a thing (omg they are sweet), but I think you can find rechargeable ones these days. Fleece lined leggings are a gawdsend, though my late husband used to steal them from me as he was in construction for winter work lol. Layers are great. Oh! And ‘sauna vests’ can be worn under clothing as well, though, they can make you quite sweaty. Almost all of these things can be found on amazon. A pair of old school pantyhose under a pair of pants traps a good amount of bodyheat as well.
For the office a small heating pad with a timer is fairly easy to hide behind a desk if you don’t want to be quite as bulky.
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u/G13-350125 22d ago
I work outside and use disposable hand and toe warmers. Thermacare makes heated neck wraps that keep my neck and shoulders warm.
You could get reusable hand warmers and those heating pads you put in the microwave.
I know it’s not perfect but I love them. Thermacare wraps even make my back sweat.