Dear Janet,

My dad, who was diagnosed with high-risk myelofibrosis after he passed away, had bone pains from ET since late adolescence. They were explained away as rheumatoid arthritis, he was investigated for RA several times, RA was excluded as diagnosis, and then no other investigations. At times he felt he had something akin to a tooth pain feeling in the tibia or other big bones in the body. Never in the joints themself, as it would be specific to RA. He never had gout.
I have similar pains in the big bones, especially bones of the legs and arms and shoulder blades. No signs of buildup of uric acid in the blood.
From what I could read, bone pain is due to the bone marrow overproduction of blood cells specific to MPNs. And most likely due to the fact that MPNs cause chronic inflammation.
I heard someone taking Neulasta, a drug that stimulates bone marrow to produce white blood cells, complaining of similar pains, sometimes much worse, and it sounded similar to our pains, just not at the severe level people taking Neulasta have it. Bone marrow swelling and pain are common in people who take this medication, and it is most likely present also in people with MPNs.

Best wishes,
Tatiana