Fatigue

[Blucloud]

Is fatigue from PV permanent? Mine has become much worse in the past month. My blood counts are good and iron levels and glucose are at acceptable levels. I was diagnosed about two years ago. I’m on 500 mg hydroxyurea every second day. I’m wondering if anyone has had the fatigue pass, even if it’s temporary? I’m trying to figure out if this is the new normal for me.

[Cat1001954]

I’m same as you I’m so fatigued all the time my hydroxy has been in creased as my platelets have gone up I’m exhausted

[Blucloud in reply to Cat1001954]

Best wishes Cat. I hope you start to feel better soon. ♥️

[Mazcd Partner MPNVoice]

hi Blucloud, I am so sorry to hear that you are suffering with fatigue, it is a horrible symptom. This information on our website might help you

mpnvoice.org.uk/living-with...

[Blucloud in reply to Mazcd]

Thanks so much, Mazcd. I read this and I do try to follow this advice.

[ainslie]

Allegedly 92% of us with MPN suffer fatigue to varying degrees. There are good tips in the link Maz provided, Dr Mesa did a lot of work on fatigue etc. I follow most of the suggestions in the link, in particular exercise, I know it sounds strange if already fatigued but getting out and doing 20-30 mins of fast walk/jog/cycle/swim/climbing stairs makes a big difference for me. If new to exercise start low build slow and if in doubt get all clear from GP.

One thing I would add is it might be your MPN or med but if it’s changed a lot in the last month it is probably wise to check with your doc in case something else has gone off a bit which may be unrelated to MPN as the MPN fatigue is usually pretty steady.

Is it permanent?,maybe , but it can vary depending on which meds you are or are not on, lifestyle, mood, and of course what stage your MPN is at, your recently diag so unlikely much if any change in MPN. Good luck with the anti fatigue journey, we are all on it 😀

[Blucloud in reply to ainslie]

Thanks for your reply, Ainslie. I do find that moving is helpful. I tend to feel good when exercising, but when I stop the fatigue comes back. I’ll just have to keep pushing myself and see how it goes.

[EPguy in reply to Blucloud]

I 2nd the get moving action. When I had just an MPN it was quite helpful.

[FINFAN1970]

I also suffer from fatigue, changing plans happens, I feel like I sleep to much, I force myself and challenge myself daily as most of us, I take a few naps as needed, try not to stress and go with it, stress is probably worse than the fatigue because of what that can do to your body, just remember it will pass and do what you were gonna do another day, keep working through it, I know it’s difficult.

[Blucloud]

Thanks for your words of advice.

[hunter5582]

Fatigue is a common complaint. It can come from the MPn, the hydroxyurea, or both, or another cause. Given the recent spike, assessing the situation is important. Suggest reviewing all of the relevant factors with your care team. Others have already made good suggestions. I would add assessing your sleep patterns would also be a good idea. insomnia is common with MPNs. More subtle sleep disruptions, including the quality or sleep not just the length is important to assess. It may also be worth doing a more complete nutritional assessment, including the Vitamin Bs.

Wishing you all the best.

[Blucloud in reply to hunter5582]

I do have insomnia from time to time. I wonder if it’s worth going to a sleep clinic? I went years ago before PV and the only thing the Dr. suggested was exercise. Perhaps a naturopath would be helpful for a complete nutritional assessment, though my B12 is within the normal range according to the recent blood test. Thanks for the advice and good wishes.

[hunter5582 in reply to Blucloud]

Insomnia can cause significant fatigue. It is important to recognize that sleep quality matter as much as sleep quantity. Consulting a sleep specialist would be a good idea if you have sleep issues. Consulting with a naturopath would also be a good idea. There are more critical B-vitamins than just B12. There are other nutritional issues that should also be evaluated when managing chronic fatigue. Best to consult with a medical professional who has expertise in nutrition on that.

[Blucloud in reply to hunter5582]

Here in Canada, I need a referral from my family doctor to go to the sleep clinic. If I can get one from her, I’ll go. I’ll also try to find a good medical professional to help with nutrition. I think what you’re referring to is not just advice about what to eat, but a lab analysis of vitamins, minerals etc.

[hunter5582 in reply to Blucloud]

I am suggesting a comprehensive nutritional lab analysis. I had one done by my Integrative Medicine doctor. gdx.net/products/nutreval

That is not to suggest that what you eat is not important. It is, in fact, critical. Eating a healthy diet can help reduce inflammation and improve other health issues. Many of us use a Mediterranean Diet for this reason.

Wishing you all the best.

[Blucloud in reply to hunter5582]

I’d like to get and am willing to pay for this type of testing. Thanks for all your info, Hunter.

[LittleLuna in reply to Blucloud]

I can second Hunter on further testing and have been seeing a Functional Medicine Practitioner here in Scotland UK for nearly a year. It is fundamental to look at the whole body, all the systems and if you can afford to, get additional tests done. We are very restricted here in the UK with what NHS will test. I have found a very marked improvement in my QoL this year and have identified other complex health issues. When we have a Dx we tend to blame the one thing for how we feel when it can be a multitude of issues stemming from co-morbidities.

Nutrition changes have been a key benefit along with moderate exercise, yoga, rest, quality of sleep.

Thanks to Hunter and other amazing USA folk on here who pointed me to the Functional Medicine route.

❤️

[Blucloud in reply to LittleLuna]

Thanks for your reply, LittleLuna. I believe Functional Medicine here in Canada is called Integrative Medicine. I think they are medical doctors with similar training to naturopaths. They would be expensive, but I’m thinking of looking into them or else seeing a naturopath. I prefer the idea of a doctor with additional training.

[LittleLuna in reply to Blucloud]

Mine was a microbiologist in a previous career so that medical/science background is great.

[Anouchka]

I have same - diagnosed 2 yrs ago but now on Jakafi. Hasn’t made a difference. As others say it’s in various degrees and can depend on activities, weather (heat), …

An occasional afternoon nap helps but I’m always afraid it will affect night sleep which has been good throughout, but doesn’t seem to have had that affect yet in the heat waves we’re experiencing at present. At the end of the day I just give in to it and go to bed earlier. Hope you find a good way to adjust to it but more preferably that it changes for you. All the best.

[Blucloud in reply to Anouchka]

I can get 7 or 8 hours sleep - though not straight as I wake up to go to the bathroom once or twice - and feel tired when I wake up. I’ll feel like lying down often during the day, but most of the time, I don’t nap. I’m trying to push through , but it’s not just physically pushing through, but mentally as well. I appreciate your comments and good wishes, Anouchka

[Tipsy2023]

Morning Fatigue is a major issue for me too .

In the last few months I have been taking B12 even though my levels were low end of normal I feel it has made a difference and on recent bloods my level has risen .

I know that one days total inactivity which is very easy when fatigued makes me feel worse for next few days so just trying to get up and out for a short walk even, to start the day makes everything feel better .

I think the most frustrating thing is when out and about and fatigue sets in a short rest doesn’t seem to help I don’t recover just feel as tired . Until I have a proper sleep again .

Managing to do nice things that bring joy has become more important so leaving the general stuff for another day is now the norm ! L

[Blucloud in reply to Tipsy2023]

I agree about managing to do nice things. I’m retired and if I’m at home with a to do list of chores, I feel the fatigue more deeply. Socializing, exercising with others, hobbies can be good distractions.

[monarch5000]

I had severe fatigue from hydroxyurea and less when I switched to Pegasys interferon. In fact, the way I convinced my hematologist to prescribe Pegasys was to tell him the fatigue from hydroxyurea was intolerable and I refused to continue taking it.

My main reason for switching is that I didn't want my lifespan cut short by disease progression and hydroxyurea doesn't significantly slow progression like interferon often does.

[Blucloud in reply to monarch5000]

The interferons are good for the possibility of a remission from the disease. At my age, I wouldn’t be offered Pegasys. The hydroxyurea is working well for my blood levels so I’d be hesitant to change it now. I wish you well on your journey.

[Crossefield]

I find my fatigue goes in cycles. It was the same before I started pegasys as it now with bloods all in line.For a few months the fatigue is worse with daily naps and more brain fog etc. It can get me down somewhat. But then without warning that cloud lifts. Then I have a period of excess energy where my head is clear and I wistfully think I could run marathons again. I still get tired but no afternoon naps. I also feel at one with the world. I know the cycle will end and repeat so I always focus on the knowing the next period of excess? Energy will arrive one day.

Keeping active is key. I tell people that it's my energy and I use on what I love. So when it's a choice of cycling/hiking/evening out I'll prioritise that over household chores or a days work.

Finally I find that no matter how full or empty my tank is I'll always run it too empty despite any fatigue crashes it causes.

[Blucloud in reply to Crossefield]

I would love it if my fatigue was cyclical rather than constant. It would do a lot for my mood and outlook to know that the fatigue will lift. It has been over a month now, but I hope there is, if not complete improvement, at least some. I like your advice about using energy on what you love.

[william-Indo]

Keep aktif and exercise every day.Push your self and you also could boost you energy with plain coffee 2-3 cups everyday

Cheers

[Blucloud in reply to william-Indo]

I love my morning coffee, but can’t drink it after 12 noon due to insomnia. I love sitting and reading, but all the encouragement to keep active is helpful.

[Luthorville]

I was just talking about the fatigue with my wife. Gotta push through as best as possible. Hopefully try something new to energize you: tennis or some other organized activity that you feel an obligation to go to-

Good luck!

[Blucloud]

My regular exercise class is off for the summer - and I miss it. I play pickleball one evening a week. I’ll force myself to go, but feel most energized when I’m playing.

[EastYorkshireman]

what a coincidence. Your post came through just as I was trying to motivate myself to get up out of my chair and get some chores done that I promised myself would be completed before the end of the day.

As everyone has stated, the fatigue is the worst symptom and affects so many of us. I do start each and every day with an early walk(6am) of 3 to 4 miles as I know this will “ get things going”. However some days, like today I grind to a halt by lunchtime.

I’m waiting for my quarterly blood test results which have been steady for several months but when I feel like today ( utterly overwhelmed with fatigue) I almost hope that my levels are off so adjustments can be made to my medication or a phlebotomy draw can be done to bring my numbers stable and relieve this period of profound fatigue.

It’s good to know I’m not on my own in this but at the same time I wouldn’t want anyone else to experience a day like today. Good luck to everyone and let’s all make the very best of the good days. God bless.

[Blucloud]

Chores are always tough when the fatigue is profound. I guess we have to prioritize what is necessary. I’m impressed with your 6 am walks of 3 - 4 miles. It’s good to know that you have good days. I wish you strength to get through the bad days.

[BloodyMPNS]

Hi Blucloud. The fatigue is the worst part for me, after 17 years I have stopped working and thought it would be better but the fatigue hasn’t gone away. I sleep when I need to and walk my dogs daily and do some yoga a few times a week. I’m on hydroxy 5 days a week and have had 2 injections of peg so far which I’m hoping will make a difference. Try to prioritise what is important and save energy the day before important events so that you can enjoy them. I wish you well. Mel x

[Blucloud in reply to BloodyMPNS]

I hope the Peg helps. Thanks for the advice.

[2408]

Hi Blucloud "Sleep"rather than "Rest" is the only way for me to recharge.Fatigue can effect body mood and spirit.

Outdoor exercise walk/garden.Hydration ++ and coffee helps.Once your bloods are OK and your nutrition good your and your not anaemia then it is a symptom.

Embrace the new you

Pace your day

Priorities Sleep - day and night

And be good to you.

Own your diagnosis.

Ask medics any questions you like- keep informed it minimizes stress and confusion.

Keep reading this group's advice,experience,good information and encouragement.

Knowing you have mates helps.

[Blucloud in reply to 2408]

“Own your diagnosis.” That really stood out to me. Thanks for all your tips.

[TTA_]

Fatigue is a common symptom in MPNs. Even in people diagnosed with low-risk ET or PV. Pacing and organising activities so that you do them when you have more energy is one of the recommended strategies, together with making those around aware of the fatigue common in MPNs, asking for support, delegating, etc. You hear exercise often, but one should think of the type of activity that one can do without risk of weakness or injury, as dizziness, numbness and concentration problems can also be present.

"Prominent symptoms include fatigue (92.7%), early satiety (61.9%), abdominal pain (45.9%), abdominal discomfort (53.2%), inactivity (60.5%), headache (48.3%), concentration problems (61.7%), dizziness (55.2%), numbness (61.3%), insomnia (65.4%), sad mood (62.7%), sexuality problems (57.9%), cough (46.4%), night sweats (56.4%), itching (52.6%), bone pain (48.5%), fever (20.2%), weight loss (34.2%), and impaired quality of life (84.2%)."

ncbi.nlm.nih.gov/pmc/articl...

Fatigue is also an overlooked or dismissed symptom, despite its serious imapact on patients' quality of life.

"Fatigue in MPN is common, debilitating and distressing. It affects all aspects of health, wellbeing and life. Health professionals could affect patients' lives substantially by acknowledging and understanding fatigue in MPN, including contributing factors and potential opportunities for management. More systematic data describing the causes and management of MPN fatigue is needed."

onlinelibrary.wiley.com/doi...

The fatigue is not going to disappear over night, sadly, so learning how to organise our day to make the most out of it is a good strategy. Also, having support is very important, as pushing through when fatigued is counterproductive.

[Blucloud in reply to TTA_]

Thanks for this info. I’m getting a lot of advice about pacing activities. I’m a little anxious as I have a big trip coming up that I can’t back out of. Sometimes it’s better when I have a schedule and focus to distract me. I’ll just have to do my best.

[ritaandscooter1]

I've had PV for over 20 years and have been on aspirin only. I agree with everyone that it's crucial to exercise daily, keep your weight down and lately I've increased water intake which has made a noticeable difference!! I also make sure I get a solid 8-10 hours of sleep. The increased water intake has made a remarkable difference with fatigue. I'm pleasantly surprised. Give it a try! Kerry

[Blucloud]

wow. only aspirin. That’s fantastic. Will drink more water as per your advice.

[RuaSaoirse]

I've been feeling the same the past month! I always have fatigue but it's much worse recently. I'm on Pegasys. My Dr has reduced this to 90mg per week as bloods are good, so hoping this will help. They also suggested a multivitamin that doesn't contain Iron. Hopefully it's a temporary phase! 🤞

[Blucloud]

My fatigue started in July after a very active month in June. Like you, I hope it lifts. I hope you feel better with the reduced dose.

[souplover]

I seem to be doing a little better with this lately but I do still feel the very heavy fatigue sometimes. One of the worst parts is that people think oh it's JUST fatigue! Or they think, well, you're getting old so what do you want? But it's a different kind of fatigue, very heavy and I find it just settles on me, sometimes with no apparent reason.

I want to do stuff and I don't want to say no to doing things that give me joy, like babysitting. But if I want to do those things, I have to push myself despite fatigue. Which can be difficult. I often don't say anything so they won't count me out.

I do find that my best way to deal with it is to do and to move. Which is not so easy when you're feeling so exhausted that you want to cry. But I make deals with myself: just only get up and stretch and then you can stop. Or get up and just get a drink of cold water. Something easy and that feels good. And then usually it gives me just a tad more energy that I use to push a bit further, to go for a walk, etc.

Finally, I'm a vegetarian so it's a bit challenging to get iron into my diet. But lately I've been eating a lot of beets and green veggies - and I think it is helping my iron levels.