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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone With An MPN Experienced Painful Ingling In Your Extremities, Sometimes Followed By Hot Flashes And Sweating? Thank You

A myMPNteam Member asked a question 💭
43204
August 26, 2023
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A myMPNteam Member

I pray that they will dissipate for you. My platelets are very good all within range, so thank God for that!
I haven’t had the experience you’ve had (thank God ), I hope yours condition clears. You have a a very good doctor to diagnose this condition. I myself have ET as well .
Doctors advice, reducing your platelets. I 🥰myself get terrible sweats and hot flashes so I keep my house cool . I have fatigue a lot. Some days are good others you can forget it then I have to rest anybody have any suggestions? I do walk my dog and do what I can around the house. I have hired what they call Maids service to clean my home. I’m really glad about that as I like a neat home.

August 28, 2023
A myMPNteam Member

At 80, I never did have hot flashes…but for the last 4 yrs before diagnosis of ET JAK2, I went from doc to doctor to find out why my arms and legs ‘ burned inside’..like boiling blood..wakes me up, but does go away if I walk around..it wasn’t until I got to a hematologist that she explained…it is . Secondary erythromelalgia which occurs when there is an underlying blood, neurological or immunologic condition. These include: Autoimmune diseases, such as lupus and multiple sclerosis and Essential thrombocytopenia blood disorder that causes your body to produce too many platelets..I’m hoping it will dissipate as platelets drop.🤞

August 26, 2023
A myMPNteam Member

I'
I'm having 2nd thoughts as I read other answers. I have PV and recently have been taken off hydra as my body doesn't tolerate it after 8-9 years. I've had night sweats that wake me up or even when I'm awake. I get up and go to the bathroom and I always attributed the relief of the sweats to going to the bathroom. Now I wonder if just getting up and moving isn't the reason for relief! At 72, a month away from 73, night sweats shouldn't be an issue.

September 2, 2023
A myMPNteam Member

I have not had night sweats, but the tingling and burning in my feet and sometimes hands is painful. Moving around helps.. I am on my feet all day as a teacher. I only notice it at night.

September 1, 2023
A myMPNteam Member

I haven’t had tingling, but those darn Sweats, hot flashes are terrible.
Sweats are bad enough it wakes me at night when I do get them and its like someone threw a pale of water all over me.
My night gown is drenched, i have to get up, wipe down and put Johnsons Baby powder all over me to feel better.🕊💞✝️

August 26, 2023

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