Does your oncologist acknowledge that ET may cause bone pain?

I have night pains in my knees and lower legs especially when in bed. I do have ET but only take low dose aspirin. Started a couple of years before my diagnosis. Doc doesn’t think the pain is from ET. It may originate from back area, he thinks.

Thank you for your comment. I also have especially at night in bed. During the day I have back pain, not at night. sigh....as Bette Davis says "Growing old isn't for sissies"

Just a thought: Did you ever have a bone marrow biopsy to look at fibrosis in marrow?

yes, i've had BMB about 2 years after, but elevated platelets triggered the test, not the bone pain. I've raised the question repeatedly with onco/hemo and pcp.......haven't gotten any answers......so I live with it

I have ET severe pain in my lower tail bone when I stand up then it subsidies -in addition to joint pain , as far as my legs I need to walk at least 1/2 hr a day plus leg massages to legs at times.
The leg center found a blood clot durning an altrasound so . .. I am on blood thinners in addition to HU. I hope you get some relief .

I've had shin bone pain (and toes) for at least 6 years now. The only thing that helped before ET diagnosis is nightly aspirin, just so I could sleep. The bone pain is only at night in bed???

You should consider having it evaluated by a neurologist. I have neuropathy in both feet and ankles. At night it resembles bone pain. Now I'm on medication that helps but you just learn to live with it. It is not related to my ET or the HU that I take daily.

I've been having bone pain for 3 years before I was officially diagnosed with ET and taking HU. My oncologist says not from ET or HU, but wonder, as many patients seem to mention bone pain condition. Does anyone have any definitive information or research?

Hi Victoria, I see that you haven't yet found answers regarding your bone pain. I merged your 2 discussion into one so you can continue to connect with members who also experience bone pain with essential thrombocythemia as well as with new members. I found this video with Dr. Abdulraheem Yacoub from the University of Kansas Medical Center talking about bone pain and myeloproliferative neoplasms (MPNs) that may shed some light.

- MPN Symptoms: Why Does Bone Pain Occur? https://www.patientpower.info/myeloproliferative-neoplasms/living-with-myeloloproliferative-neoplasms/mpn-symptoms-why-does-bone-pain-occur

I wish people stopped using short cuts. Many times I have no idea what they mean.
I fell a couple of weeks ago while using a walker and I fractured my lower back compression disc and another disc.
The pain is still there but I can better handle it. It only hurts when I twist it.
I have to use a cane especially outside.
I can’t believe how much falling hurts. I’m no spring chicken so I just landed flat against the floor and wall. Be careful everyone