Polycythemia Vera: Is there anything I can do for fatigue at home?

Posted by nicolekapr @nicolekapr, Mar 7, 2021

Is there anything I can do for fatigue on a home basis? Diets, iron, anything? I’m low on ferritin, my count was 49.9% so they would not phlabotimize in office. Today I am so out of breath and out of it. So exhausted and I have school caregiving and mom duties! I would do anything today. Help!? Sigh. Longtime sufferer, newly diagnosed. 🙂

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santanafrazzetta1949 | @santanafrazzetta1949 | Jan 17, 2023

The fatigue from this is really terrible i have to lay down and nap everyday

buckaroobanzai | @buckaroobanzai | Jan 18, 2023

In reply to @santanafrazzetta1949 "The fatigue from this is really terrible i have to lay down and nap everyday" + (show)

Yes, I relate. I used to nap once or even twice a day, sometimes for a couple hours at a time. Things improved dramatically, though, after I started: (1) CPAP therapy, (2) monthly phlebotomy, and (3) daily aspirin. These changes really have made a difference in my life. I sleep better now and am up during the day.

Your mileage may vary. But do NOT give up. Things can get better.

And give yourself permission to sleep. When you need to sleep, you need to sleep.

inevanmac | @inevanmac | Jan 18, 2023

In reply to @buckaroobanzai "Yes, I relate. I used to nap once or even twice a day, sometimes for a..." + (show)

Interesting you should mention aspirin.. My meds (Jakafi) were increased from 10 to 20 mg and I was prescribed aspirin 1x/day. Practically overnight my fatigue disappeared, “newfound” energy and sleeping well at night. I wonder now about the connection with the aspririn. 🤣😊

raremiracle2 | @raremiracle2 | Jan 18, 2023

I have polycythmia Vera, and 9 different rare diagnosis. Told my doctor I only collected rare diseases ... they all make me tired. Told my best friend (who lost her husband to cancer, he was age 30 with 2 babies to raise on her own for 20 years) I sleep like sleuth because my cat only sleeps 12 hours a day and I think I have my cat beat. All cancers have 2 things in common, sleep and pain. My mom died of cancer; 6/7 sibling had cancer and grandma 2, Both sisters and I join the cancer party (We talk about the curse of grandma house that was demolished when I was teenager) (I do feel like there is a link to the house but doctors told me it's in our genes) Watching love one's including in-laws died of cancer; pain and feeling tired is normal. I know more people died of heart problems including my dad, but everyone knows the word cancer and our struggle. My prayers, wishes and tears.