Night sweats

[Johan2021]

Is any of you with ET having night sweats? I have them once in a while. Is it normal in ET? And why do we get them?

I hope you all had a nice and sunny weekend!

[Nickthedevil]

Hi, yes I get night sweats. It is common with ET. Are you taking hydroxy? I find the higher my dose of hydroxy, the worse the night sweats are. Karen

[Johan2021 in reply to Nickthedevil]

Hi nick! No, im only on aspirin. Thank you for your answer. I tried to Google it but ut only says it is common in MF.

[Mazcd Partner MPNVoice]

hi Johan2021, night sweats are one of the common symptoms experienced by people with ET and PV, and I know from previous posts that many people find that using cotton bedding can help, and also, many people use cool gel pads and pillows, you can buy these in many different places. Best wishes, Maz

[netty64 in reply to Mazcd]

I found with the cool pads etc. that they work initially but then where they absorb your heat they then reflect it back to your body and make you hotter still🥴

[Johan2021 in reply to Mazcd]

Thank you for your answer maz!I tried to Google it but ut only says it is common in MF.

[Mazcd Partner MPNVoice in reply to Johan2021]

Hi Johan2021 our information booklet about ET and PV has a graph on p8 detailing the symptoms experienced by people with both ET and PV and night sweats are includedmpnvoice.org.uk/wp-content/...

[Johan2021]

Thank you! No meds, only aspirin.

[Murdoch01]

I have night sweats every night, normally early morning, I have ET jak2

[Adlon57 in reply to Murdoch01]

I have night sweats normally in the morning, why? I have diabetes 2, and am on a 'diet' I find if I relax too much with it, I usually find wet in the morning! I live by myself, if I go too far, the washing machine starts working overtime!🥴🥴Specifically the reason, that many possible other causes, given up?🙄I agree cotton bedding are the most comfortable for this situation!👍

[Wyebird]

Hi I experienced what I think are the ET night sweats ONCE.It was awful, I became very hot and stripped off. I had a Burning feeling inside my body so when I took my covers off I was still boiling.

Putting a fan on didn’t help so in the end I was so tired I took two co-codomol which was enough to send me to sleep

[Minu68]

Night sweat s every night, drenching, 2 - 3 per night, I'm significantly affected in that I usually don't manage to sleep more than 1 -2 hours before I am suddenly awake drenched, then have to sort towels, duvet etc before can even try going back to sleep. Am sleep deprived. Also get sweaty very quickly when exercising, dripping with it, and can just get sweaty any time, especially when under stress or anxious. Am on hydroxy, and will be talking to my haematologist about it in a week, will see if he has anything useful re this. x

[Johan2021 in reply to Minu68]

Hi friend! How are you? Thank you for your answer. I tried to Google it but ut only says it is common in MF. What answer did you get from your heam? Take Care!

[Minu68 in reply to Johan2021]

Hi :)The answers so far have been that there isn’t anything that can be done. Literally no answers basically, suggesting using no manmade fabrics for clothing and bedding, low tog duvet, thin layers so can adjust according to how hot I’m feeling. All things I’ve already implemented, but can’t say it’s made much difference.

I have gone onto hrt, 3 months ago, and that has lessened the sweats so I’m not drenched as much, but still get them. Though a higher amount of oestrogen patch might help even more, now we know it has helped, they don’t want to raise it because of my ET and blood clot risk. I attended the MPN online conference, asked the top experts there, and they had no answers. They don’t know why some of us MPNers get certain symptoms and others don’t, and why the symptoms ease for some once blood counts are brought down but for others it makes no difference.

Thank you for asking Johan, how are you doing now? Minu x

[Johan2021 in reply to Minu68]

Hi Minu, i am ok. I get this anxiety sometimes. I get scared. Thank you for asking.

[Minu68 in reply to Johan2021]

I get anxiety too I think living with this is scary and it’s kind of natural to feel anxious…

I’m working on the anxiety- mindfulness, breathing techniques for relaxation, and trying to reconcile with having this MPN and living with it and it’s symptoms.

Take care x

[Alexbits]

Night sweats can have many many reasons. Try to google without adding mpn keywords. Anxiety disorders is one of the reasons too. I had them when found out about my health issues, this was accompanied with lots of stress. I'm not sure what helped, aspirin, managing stress etc, but they were completely gone several months later. This year I've got them once after Moderna vaccine and 39.6C fever.

[Adlon57 in reply to Alexbits]

I find they are almost a seasonal stress thing, for months ok, usually colder as now, being overweight never helps, as far as this condition goes have had it for years, don't really think pills will help? Enough of the b####y things already, conflict with set medications and conditions, at the moment I am walking an extremely fine line already! Sleep well!👻