Have you seen the movie Universal Soldier? This is my life now. He used to get so hot he would take ice baths. That wouldn't be good for me because we all know moisture and heat trigger the dreaded itch. I always thought that was a bad description. It is more ilke the opposite of pins and needles. You don't get numb, you feel everything. Like little pins and needles stabbing you.
If I lay down on my bed and can't fall sleep quick, I am screwed. You can move to the other side of the bed, but that only lasts so long. If I don't make the cutoff I am forced to get up. If I do manage to sleep, I wake up after 2-4 hours. Going back to sleep is very difficult. I can't seem to sleep at all between 2-4 am and the longer I try, the worse the worse itching gets.
When I sit on the couch I have 5 minutes before it gets hot and have to switch spots. Showers in the morning make it horrible and the itch lasts for hours. They won't give me. Phlebotomy until 8 days from now.
This temperature changing summer has been dreadful. Hope your summer is going better!
Written by
lebowski42
To view profiles and participate in discussions please or .
There are the options like cooling pads, pillows etc. However, you may need a change in treatment plan. I expect this has more to to with cytokine activity and mast cells related to the PV. This definitely needs review with a MPn Specialist on the best option for you. Some people do find relief from symptom with ruxolitinib in this situation. Suggest you review with your care team ASAP.
I don't like the heat at all - but I thankfully have no problem sleeping.
As hunter5582 has suggested I use a cooling pillow, it works wonderfully. I also have a cooling mattress protector. I also heard someone suggest getting a pet cooling pad, which sounds like a good idea.
Other things I use: Lavender pillow spray, lavender sleep oil on my wrists and I also use 'Feather & Down' Sleep Butter, I massage it into my arms, legs and feet. They all work to get me off to and keep me asleep.
During the day, to keep cool while working, I use a giant 'ice-cube'. I half fill a 'hot water bottle' with water and freeze it. Wrap it in a tea towel and put my feet on it.
I think, as Hunter says, you might need some treatment/medication . Most of my itching stopped when I started taking hydroxycarbamide. There are alternative medicines.
My itching stopped with Ruxolitnib, may not be an option for you.When I had to manage it in the heat I slept with a cotton sheet over me but regularly was out of bed by 3 AM . Also took antihistamines.
I am so sorry you are struggling with the itch, it's horrible.
Yes 3 cooling mats, already prepared in the fridge, really do help for a comfortable night’s sleep. Also, it may or may not help but I lie the other way round for half an hour with my legs up the headboard or wall. Helps with circulation and drainage and that awful heavy leg/restless leg feeling. Switch round and then onto the cooling mats….worth a try!
Daily anti-histimines work for me. I had the added problem of my skin coming up in painful stinging welts whenever I scratched or rubbed where I was itching. It doesn't stop it completely but it really helps for me. Good luck.
I have pv and suffer with the itchy skin . I buy hay-fever tablets take 1 before I go in the shower and have the shower luke warm and the itch holds off. I have ice cream when it's hot that helps cool my blood down when the hot weather is here . I don't sleep well up every couple off hours xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Platelets now at 1336000. Is this OK or should my wife be seen urgently?
Update on vitamin 12 and my treatment plan for PV diagnosed in December 2022
Now a blood clot on my lung 🫁 
A new symptom with ET? And let down with Heam doc
Pins and needles and tinnus 
