Hi all,
I’m new here. My partner (29 y/o) has just been diagnosed with triple negative Essential thrombocythemia (ET) and is in the ‘watch and wait’ category. She has real trouble with getting incredibly cold (particularly hands and feet) and it has been getting worse, and the hospital team have no solutions - she has been referred to neuro to take a look at her nerves, but this is likely to take 6-9 months - has any one else suffered with this and do you have any suggestions?
Edit: Thermals, hot water bottles, blankets, etc don’t have any impact on how she feels.
Any thoughts or feelings on your experiences with Essential thrombocythemia (ET) also very welcome, I feel a bit lost at sea and don’t know how to help when there are no clear ‘solutions’… x
Welcome @ewright sorry to hear your partner and you are both struggling in different ways.
Your partner might consider going back to her GP to see if they can suggest a quicker idea. It might be nothing to do with her Essential thrombocythemia (ET), we are complex beings
There are things like thermal clothes, gloves and socks to consider.
Others might be able to share their experiences.
I will coy your posts to the Blood Cancer UK nurses @BloodCancerUK_Nurses
The main thing is to really look after yourselves and be kind to yourselves,
Please do keep posting. I look forward to hearing more about you
Just to add to what @erica has excellently mentioned. My folks have poor circulation so we got them a revitalive plate (Ian botham tv ad) which is good and maybe try compression socks and arm bands/gloves.
It’s definitely worth consulting with your gp/medical team for specific recommendations based on her condition
@ewright sorry to hear about your partners issues with feeling the cold.
I have Polycythaemia vera (PV), and one of the side effects of it is feeling the cold more, especially as our blood struggles to get to our edges and carry enough internal heat out there.
It was, looking back, one of the first real indications my body had changed, as I loved being out in the cold, was always in a t-shirt no matter what the weather, would stand for hours with my camera and not feel it.
Back then, I put it down to perhaps I was just getting older, that I was not doing my breathing techniques to warm up my body, turns out it was just the blood trying to get round the M25 at rush hour.
It is one of the reasons why it is suggested we check our hands and feet on a regular basis, for damage that we can not feel happening.
I find putting on my hand cream regularly helps to encourage the blood flow back as does focused deep breathing, a trick I was taught long ago to keep me warm as a goalkeeper, by a guy who had studied yoga in Nepal.
If I am outside I tend to wear my Austrian designed mittens (designed for their Special services) comes with a handy heat warming inner pocket. The trick being to stop getting as cold in the first place, layered clothing and flexing your fingers and feet/toes. Anything to encourages the blood back into the edges.
Hope this helps your partner