I was diagnosed with Essential thrombocythemia (ET) last year. Ive had burning fingertips for a year, I thought my mobile was causing it, but then a couple of months ago the same thing happened in my toes, does anyone else suffer? Is this a symptom? Is there anything to stop it, it’s really painful.
I’ve just read a few posts and it does seem to be a thing, my feet also feel like there’s no padding on them, is this a thing too?
Looking for symptoms on the Web and all it ever seems to mention is the tiredness
Hi @Lynnrobo do your medical team know about your symptoms and their severity?
I have numb toes from shingles.
Your symptoms really do sound painful.
I hope people with Essential thrombocythemia (ET) might be able to help.
Look after yourself and please let us know how you get on.
Hello @Lynnrobo. Sorry to hear about your distressing symptoms. I was diagnosed with Essential thrombocythemia (ET)/myelofibrosis thirty years ago. At the time of diagnosis my platelets were very high - over 1,000 and my feet felt like they were burning, especially in bed at night. My haematologist said it was due to ‘pooling’ of the platelets. I did find that as my platelet count decreased the burning sensation reduced. My platelets are now on the low side and I don’t have the burning anymore. Hope this helps. I wish you well. The only thing that relieved it was putting my feet in cold water, not always very practical! Warm wishes Willow x
Thank you willow, your response is greatly appreciated. My platlettes are currently about 600. I’m attentending an Myeloproliferative neoplasms (MPN) conference in October, hopefully I get some more answers there. X