Hello there @Lisaj123, welcome to the forum. I’m very sorry to read of your diagnosis with Polycythaemia vera (PV) and those rotten symptoms and am glad you’ve found the forum.
Like @Erica and @Pedro say, hopefully you’ll come to find that you’re not alone with your diagnosis. There are many of us here living well with Polycythaemia vera (PV) and other related Myeloproliferative neoplasms (MPN), and you’re certainly not alone in experiencing fatigue—I read that something like 80 % of people with cancers will experience fatigue. Isn’t it grim?!
From others around the forum living with Myeloproliferative neoplasms (MPN) I get the impression that fatigue often comes on prior to diagnosis and that treatments can help alleviate it once they take effect. When I was diagnosed with Polycythaemia vera (PV) in 2023 it came out of the blue like with you, particularly as I was very fortunate to have no symptoms. However, I started taking daily hydroxyurea and that’s when my rather disabling fatigue began. I also take daily aspirin to thin my blood, and occasionally have phlebotomy when my haematocrit (blood thickness) is above 45 %.
Not going to lie, it really got me down as I was previously very active, but over a few months the fatigue faded as my blood cell numbers improved. My haematologist told me that as we produce most of our blood cells in our pelvis the aching I felt there was likely the chemotherapy taking effect, disrupting my body’s blood overproduction. I also had aches return from previous injuries, like former tendinitis and a sprained finger, but those also faded with time like the fatigue.
So perhaps you’re also getting aches and fatigue from treatments kicking in? A couple of things I found helpful for boosting my energy during the worst of my fatigue seemed counterintuitive but are backed up by research into cancer-related fatigue, and maybe they’ll be helpful for you too.
Making sure to get daylight early in the day into my eyes helps regulate my circadian rhythm and thus improves the quality of my sleep—invaluable for me after a lifetime of insomnia! Love my sleep now.
Another research-based action I’ve maintained has been keeping active, whatever my body can manage. I do a bit of slow yoga a couple of times a week which really does energise me, even when the fatigue is making me feel flaky. Tai chi and Pilates are also shown to help. Walking and hiking continue to keep my blood flowing, and again research shows that forest-bathing and being in nature generally is really good for us.
But really you’ll get to know what your body can manage and what boosts and maintains your energy best. Something else I practice when appropriate is to just simply rest when fatigue kicks in, and then to resume the activity later. Pushing through fatigue will just make it last longer in my experience.
Hopefully over time your fatigue and other symptoms will reduce and your energy improves.
Do please let us know how you get on @Lisaj123. Maybe have a look around the forum for others living with Polycythaemia vera (PV), Essential thrombocythemia (ET) and related Myeloproliferative neoplasms (MPN) as we tend to share similar overlapping treatments and symptoms which for me can feel very comforting.
just something else to deal with.