Polycyhaemia Vera pain tips

That’s so excellent about you altering stuff, even drinking boring old water! It does seem to be these incremental adaptations that add up to something beneficial. For me, even doing occasional yoga has helped with my circulation, let alone flexibility. I hope you enjoy at least some of your alterations!

It’s so great to read of your numbers improving, I love good news for others. I think our haemoglobin levels are measured differently, but if I’m reading the figures right yours seem only just outside of the normal range so that’s another great achievement :croissant::beer:

One way I try to reframe test results that aren’t ideal but still improved is to remind myself that I’d rather have blood cell numbers a little too high but closer to normal than way off altogether. My haematocrit being too high this week was a bit of a downer after it being ideal last week, but I knew it was likely due to the iron supplement I took to offset the horrible anaemic malaise I felt, and so I had to accept that having phlebotomy yesterday would be helpful.

And it was, I had a bit of an energetic spree after my letting and got loads done! Always helps to see my phlebotomy nurses—I’m getting to know a few who’ve treated me more than once and it’s lovely to build up these passing relationships. I took them in some homemade chocolate cookies and I could hear them cooing over them while my blood drained. My nurse and I were even comparing hiking shoes yesterday! Not even my other half wants to talk about that :rofl:

Love how you describe the “memory of pain sites”, that really is how it feels, like these localised personal injuries are memories. I’m sorry you have pain sites to be reminded of! And yes, isn’t it so weird that blood can be made in such random parts of our bodies?! It would gross me out if I thought too much about it so I’ll end there!

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Not to show off but look how fast it drained yesterday, 15 minutes?! I barely had to time to chat, how inconsiderate of my Polycythaemia vera (PV)!

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@Duncan

Blood pressure bit high before but “normal” after :+1:t4:

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@Duncan show off :wink:

@Rammie18 he eats white rubber balls soaked in industrial baths of chemicals to make it almost gross enough for a toddler to eat, don’t encourage him by calling him normal :wink:

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Amazing how quickly it can calm down! Slow breathing really helps :face_exhaling:

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It’s painful once the warmth returns. :slight_smile:

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Very true - must stop sticking my head in the sand :slight_smile:

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Well, thank you - I didn’t know that! :slight_smile:

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@PollyVera think it is time this list of symptoms was updated, but it gives you a broad idea :wink:

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I’m sorry to hear that, @PollyVera, it sounds literally irritating. Something that just popped into my head is that we Polycythaemia vera (PV) survivors can be prone to gout, often in our hands, although I’m unsure how it’s affected by heat/cold and if it even matches your symptoms. If I recall correctly, a uric acid test can check for it apparently, might be worth asking to be tested to rule it out?

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