Does your oncologist acknowledge that ET may cause bone pain?

Posted by 1995victoria @1995victoria, Jun 13, 2023

I suffer with bone pain in my shins and toes. Dr says not ET or HU, just wondering if anyone else suffers from bone pain. It started a year or two before being diagnosed with ET

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I have Et, taking 1 baby aspirin and HU daily. My Doc says there are no symptoms from ET. Ive researched online and so many people have similar issues so ET DEFINITELY has symptoms. I’ve spoken to a nurse who suggested taking an antihistamine blocks something in the bone marrow that causes pain. 4 days now and pain has decreased from a 9-10 to a 2-3 pain level. I hope it continues to work because I was losing my mind!! I have burning pain in lower back, bone pain both femurs and feet mostly at night.

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I have ET and have constant shin pain and leg aches. Before HU treatment, I had jabbing toe/foot pain but now it's more of a leg ache with occasional jabs felt mostly when I'm trying to sleep. A Tylenol helps. I take daily 80 mg Aspirin and I don't notice leg pain in the daytime, but I stay busy. Sitting for long periods does cause leg pain and foot pain though, as does riding in the car for a long stretch.
I too have lower back pain and use a heating pad at night sometimes and I'm trying to strengthen the muscles around my spine with walking on my treadmill with 5 lb weights in hands. I think it's helping. I have degenerative discs in lower back as well. I'm trying to be proactive. Osteoporosis is another concern, but the meds have caused bone pain! I am not taking the Alendronate prescribed (only took 5 weeks) due to too much bone pain. I'm 74 and coping.

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