I'm new on this list. I was diagnosed six months ago with Polycythemia vera. I'm experiencing a lot of fatigue. It makes me so tired that sometimes I can't think straight and I just can't do anything.
I'm actually thinking of retiring because of the fatigue.
I'm just wondering whether fatigue is a significant problem for others with PV.
Hey SoupLover... 
Unfortunately, most of us MPNers all suffer from fatigue of one extreme or another...
It is just a part of the fun of having one of the MPNs, sadly...
Some days, for me, it's like a wave that simply engulfs me...
However, if you are really struggling have a talk with your medical team and check out your Iron & Ferritin levels... A friend of mine w/ PV recently had an Iron infusion, and he says that it has worked wonders in his case etc...
Best wishes & welcome to or little MPN club... I am sure that you will find plenty of friends here...
Steve
Hi,
I'm sorry that you are going through this. My husband was diagnosed with four years ago and experiences extreme fatigue. He also can't concentrate properly. His doctor has prescribed stimulants (adderall, ritalin etc) and it does help somewhat, although, it isn't a good idea for everyone.
You are definitely not alone in feeling exhausted. Perhaps your doctor can make some recommendations on ideas to help manage the fatigue effectively
Dear Souplover,
I can totally relate. In my case exercise helps - if I feel drained I push myself hard to do some cycling and I become more energised. It can seem bonkers to make yourself even more tired but it works. (Normalcy no longer applies, I think, if you have MPNs...) Best wishes. Know that you are not alone.
Yep I can relate to that when drained -exercise. Non of ‘listen to your body’
Mind you it’s getting harder and harder to distinguish what is ET and what is age ( 64 ET not PV )
Snap x
Hi souplover
As you have seen from previous replies, fatigue and brain fog are very common complaints from MPN sufferers. If you haven't already done so, take a look at the MPN Voice website which gives lots of verified advice on what to expect and how to cope. It's the 'bible' for many of us.
Also, be careful not to assume that all your symptoms are caused by your MPN. My GP discovered that I also had a major vitamin D deficiency which was adding to my debilitating fatigue. A 6 week course of ultra-high dose vitamin D made a massive difference to my energy levels. Another common factor is not drinking enough water - we need at least 2 litres per day.
All the best
John
Hi,
I agree completely with previous replies. There are reasons why people with our blood disorders feel fatigued. Medication can also contribute to it and of course life style factors. I took the opportunity to retire at 60 11 years ago due to fatigue.
I am on interferon for about 14 years. And I have found, I think, that this adds another fatigue layer. In the first years I had regular periods of being not able to do anything plus other times of what I called my 'Kill Bill' periods. I think on reflection these were times when I was both fatigued and depressed.
However over time these have lessened. I no longer have such deep fatigue and rarely get so depressed. But i am always low for days after injection. I plan escapist activities on those days to get through them.
I have become resigned to this state and hope that it will long continue.
The next stage is even more complex.
Good luck on your journey.
Mairead
Oh yes, the dreaded fatigue. Some days I don’t want to get out of bed. I am going through a bad period at the moment where it’s hard just to put one foot in front of the other. I am wondering what my iron level is at the moment and I know my B12 injection is due next week. Unfortunately fatigue is a big issue with any MPN. Before I got diagnosed I couldn’t get my doctor to take it seriously. All I wanted to do was sleep. You will learn to live with it and know your limits.
Take care
Jill
xx
Hi Souplover
Yes, definitely. Fatigue is horrendous.
I also agree with LottiSz, as exercise really does help - I'm not talking long distance running But a nice stroll to get your muscles moving and fresh air in your lungs really does help. Somedays it takes a lot of effort to get going, but I know that it'll do me the world of good.
Kari.
Hi Souplover,
Yes. Fatigue is the biggest enemy of PV. I have gone back to work after my hematologist switched me to Jakafi. This helped quite a bit, but as the year wore on, I have gone back to being tired, but not as severe as before. She has put me on 5mg of Ritalin which I take in the morning. It does help until I get off work, then I am back to just being tired. I can still be active, but just a smidge slower at it. I believe that this will always be there. By taking the additional meds, it does seem to help going to work and actually “be there”.
Help this helps.. take care and keep all of us posted!
🙋♀️ Sheryl
Hi. My partner was diagnosed 16 months ago age 52. The fatigue is the biggest factor. He has his own business so retirement is out of the question for us. He can’t do full days now and some days he is worse than others. He was put on iron tablets a few months back which helped but then his levels started rising again so he had to stop. My advice to him is just listen to your body, if he’s fatigued then stop. I know this won’t have helped but just knowing your not alone might xx
As you have already heard, fatigue is common with MPNs. it is also a side effect of various medications, including hydroxyurea (asthenia/dyspnea). As others suggested, somewhat conversely, light exercise does help. So does moderate exposure to the out-of-doors - natural full spectrum light (being careful of overexposure to sun on certain meds). The tried and true daily dose of caffeine can help for a few hours, as does any stimulant; however those come at a cost and if you have issues with blood pressure, arrhythmia, or anxiety you have to be careful. One thing I have found helpful is American Ginseng tea. It gives a mild energy boost without the more pronounced downside to caffeine. (Be sure not to use the Asian or Korean Ginseng as this is a stronger stimulant).
Finally - do check on your nutritional status. Sometimes as we age our bodies do not metabolize nutrients as well. I did a higher level nutritional evaluation (NutrEval) and was found to be seriously Vitamin B/Folate deficient, and moderately Magnesium deficient. Also was vitamin D deficient. When managing an MPN it is extra important to pay attention to our overall health, including nutrition.
Hope that helps. Meanwhile - hang in there.
Thank you, everyone! Your responses were SO helpful. Most of all, I really needed validation, that I'm not crazy or a hypochondriac.
As someone said in their response, it's not entirely consistent. Some days, I'm wiped out - and others, I feel at least almost okay.
I am exercising regularly, pretty much every day. As you all point out, once I get in motion, I feel better.
I'm not so good about drinking water. I'll try to work on that one.
But sometimes I'm so wiped out, I just can't think straight. That's especially hard when I'm at work, which is one reason that I'm thinking of retiring.
Does the fatigue worse? Or it stays about the same?
I've been dealing with pv for 3 years now with phlebotomies and hydroxyurea keeping the no's at bay. 72 and pretty active but fatigue catches up with me almost every day. I'd say all of the replies are on target here. It seems to be something of a whack a mole approach for me. A couple times a week I'll take an iron pill if I think I'm feeling more tired or dizzy but otherwise taking a break in the midafternoon is a necessity. Good luck and stay positive.
Hi Saltmarsh,
I'm 74, so I can relate. I'm still working, babysitting, active in my community. But I am constantly pushing through the feeling of fatigue. Sometimes before I even start the day, I'm so tired that I lie down for a few minutes again. By the end of the day, I am totally wiped out.
I do find that if I push myself, I often feel better, but it's hard! I kind of make deals with myself to get myself going.
I was told by my hematologist not to take iron supplements, that it could raise my levels of one of the factors such that I'd have to increase the hydroxyurea too. So you should check with your hematologist if you haven't already done so.
Yes. That is a possibility but it's a balancing act. We're trying to reduce the frequency of phlebotomies and the subsequent effects on blood. I can tell you an occasional iron pill does help my energy levels. I was anemic back in June partially from knee surgery so per my hematologist I took iron every day for 6 weeks and recovered. Currently just on 500mg hydroxyurea/day and feeling ok. Time will tell. Good luck
My hematologist sometimes offers a vitamin B shot. I'm wondering whether there are side effects and whether that helps. I've done it twice but wasn't so sure it made a difference.
Hi Souplover. I can't say that my situation is any more or less representative, but I will
Souplover - 2nd attempt. I can't say that my situation is any more or less representative, but an occasional iron pill after a full six weeks of iron supplements did help. I'm no longer taking them as I feel better and numbers are back where they should be. We are experimenting with no phlebotomies even though hematocrit is about 50. I still am pretty tired by 3 in the afternoon but part could be age - 75 - and the fact that I start my day early - walking by 7am and keep busy throughout the day. Keep at it and discuss some alternative approaches with your doctor. I know it's not funny to deal with some of the issues with this disease.
Are you taking hydroxyurea? My hematologist put me on hydroxyurea because she thought the phlebotomies would be more difficult for me to tolerate. Can't remember the exact reason. But maybe you'd do better with the medication?
Yes, I'm taking hydroxyurea. Was on it for 9 months to bring my platelets down prior to knee replacement surgery last March. After the surgery it was stopped. Resumed 6 weeks ago as an alternative to phlebotomies which I'm not a fan of because although they work, they also tend to result in a roller coaster for my blood. Since restarting hydroxyurea the platelets have dropped to 480 but rbc still a bit high resulting in a hematocrit of 50. Tolerating the hydroxyurea well but only taking 500mg once a day.
Sometimes the day after interferon I will sleep on an off the whole day. Like today
I was diagnosed 6 years ago with PV. In the last year I am so tired. Sometimes it feels like my legs won’t carry me. It’s hard to think straight. Being so tired is such a miserable feeling.
I was diagnosed with PV in November last year. I feel the same as you Debbie Jean, I can’t walk the length of myself and feel dizzy most of the time hoping one morning to wake up and get some normality back and I have only been on this journey for a few months. The way I am feeling I don’t think I can cope if this is my life from now on but I pray and hope for a better day soon
Periods & Secondary Polycythemia 
Polycythemia Jak2 negative
Polycythemia vera and urticaria
Diagnosis with Polycythemia today
