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I have JAK2 ET and MPN: Anyone else have these symptoms?

Blood Cancers & Disorders | Last Active: Jun 19 5:40am | Replies (63)
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@colleenyoung

Welcome @jak2mpnpositive, allow me to tag other members like @claire39 @bluegrasspv2018 @jam5 @dwlowrance @levieta @lzimmerman @mpt77 @huronshores @markdi @stevehurlburt who have the JAK2 gene and either myeloproliferative neoplasms (MPN), essential thrombocytosis (ET) or both.

I'm glad that exercise and movement helps alleviate the purple feet and feeling of stagnant blood. But obviously you can't be in motion all the time. Does this also happen when you're lying down? How do you feel upon waking in the morning?

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Replies to "Welcome @jak2mpnpositive, allow me to tag other members like @claire39 @bluegrasspv2018 @jam5 @dwlowrance @levieta @lzimmerman @mpt77..."
jak2mpnpositive | @jak2mpnpositive | Mar 3, 2022

Thank you for your response. If I’ve been sitting without much movement, I can wake up with the cruddy symptoms. It can take a few days of movement before I start to feel better. Oddly, there does seem to be a correlation of feeling worse if I sit at a desk in front of a computer on a daily basis. I had to leave my previous career due to how uncomfortable My body was. And when I say uncomfortable please know I mean I could not find any comfort and felt like I was going to die.

Since I’m no longer at a desk daily, my symptoms have greatly improved, but still exist on some levels. Lying down definitely helps, buy as soon as my feet touch the ground in the morning, I typically feel the burning, pooling type sensation.

Would love to hear others stories!? And can anyone relate? Anyone else have Lyme disease trigger their jak2?

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