How to replenish energy levels - Thrombocythemia

I have ET/Jak2 and I have been taking vitamin I’ve infusions for almost 2 years. Was just diagnosed in March but knew something was wrong. I’m a huge believer in these infusions and they also help keep my immunities up so in answer to your question… yes.. for me they help. Not a cure all for sure but they sure don’t hurt❤️

ET/CALR x 18 years. I am 72. Yoga, qigong, exercise bike help with energy. I have to exercise before noon or the day is shot. I have mobility issues, so I started by sitting comfortably out doors and doing controlled breathing exercises. Getting more O2 in my brain got me ready for real exercise. YouTube has thousands of these exercise how-tos.

Brain fog/mental fatigue is sometimes a problem for me. Exercise helps. So does reading, journaling in my "nature" diary, knitting, writing letters.

Doing something for others is good.

What (if any) treatment has your doctor started you on?

If you're taking HU, for instance, as that brings down your platelet count, you'll get your energy back.

In the meantime, please be patient with yourself. You can't do everything you used to do. That's an inescapable part of this whole crazy business. When our bone marrow is working overtime, we get REALLY tired.

To better days ahead!

I have ET/CALR for about 1 year. I'm 76, heading toward 77 in 3 months. I take daily naps and go to the Y twice a week, as I continue to work on 12 weight machines and walk 8/10ths of a mile. Yes, it's a "push," sometimes; but, I just come home and take a short nap. Also, I have a loving, supportive wife, who says to me, "You need to sit down and take a break. You can't do what you once did." I'm gradually giving into that kicking and screaming. Still, I'm going to keep my body as strong and healthy as I can as long as I can. I refuse to give up the power of my spirit until I just can't do it any longer.

I was diagnosed with ET CALR about a year ago with platelet counts around 660. I was put on low dose aspirin once a day. When my count got to 866, I was put on 1000mg of HU daily. My platelets dropped fast to around 250. My energy levels tanked, too. I felt like I was walking through waist deep water all day. My brain was tired and slow. My RBC was quite low and even after a dose adjustment of 500mg on odd days snd 1000 on even, my RBC continued to drop, though my platelets plateaued. I hadstarted to get headaches around my temples, the skin under my nails turned black, and food tasted bland. I requested a lowering of my HU dosage. At first I met with resistance because my doctor liked the platelet count so much, so I had to reiterate my side effects and their negative impact on daily living. Now I am on 500mg a day, and I feel much better! I don’t have a blood test for another couple of weeks, and I hope my platelet count will be acceptable. Fighting for your best outcome when dealing with any disease takes knowledge, listening skills, and perseverance on both sides! My doctor’s office encourages my participation in my treatment plan. I hope you can work out what your next best step is!

@nohrt4me
I have something else but came here when I saw the energy part mentioned. I also suffer from fatigue. It’s not that I can’t do exercise, it’s that I’m too fatigued to do it. But your words of wisdom have remotivated me. I’ve printed your words to put on my refrigerator to remind me. One question, what type of things do you write about in your nature journal? I’m surrounded by nature, maybe I need to keep a nature journal also? TY.

@amberl99 I have a little book with a page for each day of the year. I write down interesting birds I see around the countryside, when I see the first fireflies, when it snows or storms, when the chives first poke up out of the garden and are big enough to cut and eat, what day I turn the furnace or AC on for the first time. Just dumb stuff, really. My great-grandmother kept a diary like this. She always wrote down when she made her first rhubarb pie. It's kind of fun to see when these things come around each year.