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

I have pv and i am always fatigued each day i have to rest i also feel sad alot my life has changed so much 🙁

Diagnosed with PV a little over a year and a half ago... I am going to post what has been working for me.. There are days when I feel very fatigued as well.. On those days (weather permitting) , I actually "push" myself to go for a bike ride.. Not a real long or fast ride, but one that gets the blood flowing... For me, I usually end up feeling much better after the ride... So far, that has been working for me and I will continue to do this as long as I can.. Maybe even a brisk walk could work for others???

The best thing that I have found for dealing with polycythemia vera has been to adhere to a very low carb diet. When I am in nutritional ketosis I feel much better and the time between my phlebotomies increases from roughly once every four weeks to up to five months between phlebotomies. Your mileage may vary, and before starting a diet like that I would strongly encourage you to meet with your physician and make sure it is safe for you. A keto diet is definitely not something you can do if you are Type 1 diabetic!

Started the low(er) carb diet a full 7 months ago but my bowel never adapted. Any words of wisdom?

(By the way, I lost 25 pounds on the low carb diet and now my type II Diabetes is in full remission. Imagine that: I was a vegan diabetic but now I am a egg-eating 'non-diabetic.')

Congrats on losing the weight and getting your Type ll Diabetes under control. Wow! That’s quite a testimonial. It’s not easy giving up carbs but it surely pays off.

Wondering if your bowels would benefit from a daily dose of Metamucil. That’s our go-to solution at our house when there are ‘less than productive’ issues down there. Links everything together and keeps the parastaltic movement in the guts normal.
My husband takes it daily but only a half dose. So that’s one teaspoon mixed in water daily. It’s helped him immeasurable with a gastro issue he developed a couple of years ago. No symptoms once he started the daily regimen. There is a sugar free version and it’s easy on the guts. No surprises if you get my drift. We eat healthy with plenty of fiber but this sets everything right.
Have you tried Metamucil?

Hello,
I too have Polycythaemia Vera. I was diagnosed just over one year ago when I had an extreme blood pressure episode with tingles in my arm. I thought I was having a stroke. In the course of investigation they found my haematacrit was 56% and my ferritin level was 9 and the JAK2 gene had mutated. My haematologist suggests I have had this condition for a long time. I am 70 years old. I do get tired but find if I exercise I do feel better for a while. I am on 100mg aspirin daily. To begin with I had 6 phlebotomies over 3 months which brought the haematacrit down to 44%. I then had one at 2 months and another at 6 months. I am now on a 4 monthly schedule. Things that I have found that I think have helped are intermittent fasting and blood thinning foods like tomato juice, cinnamon, dates (I’m into natural remedies). This hasn’t helped with the low iron count though which hasn’t changed and I am now experiencing shortness of breath and rapid heartbeat. I am not sure what I can do to manage that. Any ideas would be greatly appreciated.

Sorry to hear of your struggle. I sincerely hope you see an MPN specialist for at least a consult.

Thank you so much Eileen. I did have a consult today. Seems my latest symptoms are inconsistent. Could be panic attacks. Best wishes for the New Year.

Hi,

I have E.T. and last examination told I have P.V. I had shortness of breath and exercised more slowly by walking more, which has worked. I eat lots of greens, vegies and lots of meat which has helped me with all conditions now.
I would be cautious about using asprin, which I used but I am on hydrea prescription, taken wisely with blood counts after visits to pathology.
For me it has been over a decade now, when my platelet levels hit over 900 and now have dropped after all this time to less than 100, which is why they think I might have P.V. Now my levels are rising again back to normal levels 150 -450.
Patience is a key, with exercise, eating well and resting.
All the best with all out there.

Careful with the leafy greens. I am really 'into' spinach and kale but apparently those foods increase red blood cell counts.