I was diagnosed with Polycythemia Vera 4 months ago. My healthcare facility that I went to for years started an app where you could see your test results, I downloaded it on my phone. One day I was just looking on the app through some lab work I had done over the years, I would have a check up done yearly and was always told my bloodwork looked good. I noticed since 2019 my platelets were always out of range and very high. I had an incident that happened to me and went to see a cardiologist , after my heart checked out good, I mentioned to him that I had noticed the high platelet count I had for 5 years on my lab work. He sent me to a hematologist. I had some body pains, headaches, tiredness. I was diagnosed with polycythemia Vera at that time. I was put on hydrea 500mg 2x day, after a few months of this my platelets, rbc and white blood cell are normal. But the pain from my bones and joints are almost unbearable, sometimes I can’t raise my arms to fix my hair, buckle my bra, just move in general. The pain is always there, sometimes it’s worse, sometimes it’s not too bad. It’s like it will come in waves, not so bad then work its way up to unbearable then back down to not so bad. My arms and elbows hurt the most. I’ve tried lifting 2lb weights, just trying to exercise my arms but it makes it worse. The only exercise that I seem to be able to do is walking.I don’t know if this is caused from the disorder or from the hydrea…has anyone else experienced pain like this
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Dear @LisaT2025 - welcome to our forum. I’m so pleased that you’ve found us.
I’m very sorry to hear about your diagnosis and of the ongoing pain in your bones and joints. I’m not a medical professional, but know that when I was first diagnosed and started treatment for a different blood cancer that I experienced something similar which eventually subsided, I believe as I got used to the treatment.
Have you made your care team aware of the symptoms and difficulties that you are experiencing? It’s always a good idea to keep them informed so that they can help and advise. You can also speak to one of our specialist nurses on 0808 2080 888 if that would be helpful.
Take good care and let us know how you get on.
Maggie
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