You can help an MPN patient survive. Honestly.
The secret killer embedded in every MPN is our most common symptom: Fatigue.
Have no doubt about it. Fatigue kills. It ruins our quality of life, contributes to job loss, isolation, depression, weight loss, wasting, and death.
No one has done more to assess MPN fatigue than Dr. Ruben Mesa of the Mayo Clinic and now he’s willing to help us discover what we can do to overcome fatigue using rigorous scientifically tested strategies.
The first step is for us to simply share ANY technique we now use to overcome fatigue.
(1) Just describe how fatigue impacts your life… and (2) how you manage to function despite fatigue…(3) What are some ways you have found that help you become alert and active.
We will immediately benefit by sharing this information with MPN patients and caregivers in an MPNforum article and start accumulating the data necessary for Dr. Mesa and others to consider research design and testing.
The object of this step is to assemble stories, strategies we patients have employed to beat fatigue so researchers can select variables to test clinically to derive highly specific activities we can immediately employ at whatever disease stage we’re at.
Please send your description to: ourMPNforum@gmail.com.
A few minutes of your time to write up your own experiences in simple language can literally help save someone’s life.
Please don’t delay. Before we can get help. Before we can get a study designed and funded we need to take this first critical step. Share your best techniques to beat fatigue whether short or long-term.
Comments on: "MPN’s secret killer…" (10)
60, ET, 25 mgs Jakafi twice a day. I combat fatigue by sleeping 10-12 hours a night and thoroughly enjoying my dreams. When I can get that much I am fine during the day. When, due to work schedules, I can only get 8 or fewer hours I am tired and try to get in a nap. I also eat a clean diet of freshly prepared foods, organic whenever possible.
When not at work I spend my time doing things I love like painting, reading, or gardening. I don’t concern myself with obsessive cleaning. The dust will be waiting for me when I get to it.
I was diagnosed with essential thrombocythemia (JAK2 positive) at age 62 … am now 67 and on 1,000mg/1,500mg hydrea (alternating days). Fatigue has been a constant problem for me; however, I try to do all of my energy-zapping tasks prior to my first dosage of hydrea each morning. I’ve found that little 20 minute naps give me renewed energy, if only for a little while.
Fatigue was the most prevalent symptom when I was diagnosed with ET at an annual physical.I thought it was just old age approaching. I was 64. I am now 77 and on HU. If it is really bad, only rest and sleep will help, but staying busy helps. I find that now that I help my single parent son with his two children, homework and delivering, I feel much stronger.
Hope it continues.
Rain or shine I go for a long walk.
I will be tired coming home but the fatique is gone.
Eat well !
After 10 years with PV, I have good days and bad days. I don’t ever have a lot of energy, but when I do have some, I like to go for walks, play with my cats and spend time with my husband. We recently started kayaking. He teases me and tells me how slow I am while he sits and waits for me to catch up. I keep my mind occupied with art and books. On bad days, when it’s all I can do to get out of bed, I will sometimes stay in bed. That’s right, there’s nothing like 12 hours of sleep for a couple of days in a row to recharge my batteries.
I’ve accepted that I’ll never have the energy that I had before I got sick and learned to appreciate the times that I feel like getting out of the house and enjoying life. So, I will echo the others with “exercise”, but nothing regimented, I like my activities to be fun and interesting.
Hi Zhen. To tell you the truth I have fought through fatigue my entire life. I was diagnosed with PV in 1998 at 51 years of age. How I combat fatigue is by going to the gym every day, walking my dogs 2-3 miles a day, eating properly…organic as much as possible, avoiding processed food. I feel great every day and have no lack of energy in spite of the fact that I am most likely now progressing to MF. Hope this helps, Karen LaBonte
I am 76 and do not know if I have any fatigue or if it is only the normal aging process. I cannot take stair steps two at a time anymore as I have for most of my life. I do about ten minutes of exercise most mornings. I have had PV for about 8 years but am not symptomatic of most of the normal complaints. I notice that when I do normal exertions that I get tired after about 20 minutes.
I have three secrets to keeping fatigue at least somewhat under control:
Also, a proper amount of sleep (for me 8hrs) is essential.
My husband Eric relies on 5 hour energy drinks and V8 Energy drinks. He is typically more active than most people without MF!
Walking daily, no matter how fatigued I am, helps alot. My last hem/onc stressed the importance of daily walks at an appt. I thought He couldn’t possibly understand how fatigued I was. After he told me to stop rolling my eyes, and listen, I did! It has helped for years.