fatigue

[PegSue]

Question: I (61F) have had ET for 5 years. Hydroxy for 2 years well tolerated and bloods within normal limits.

can fatigue be attributed to ET, treatment or just related to “life”.

I work P/T. Swim. Walk. But… always feel like I haven’t had enough sleep.

Thanks for any insights/comments

[Mazcd Partner MPNVoice]

hi PegSue, have a look at this on our website mpnvoice.org.uk/living-with...

[PegSue in reply to Mazcd]

thank you

[Mostew]

Do you have a good sleep or is it very broken . ? And did you start to feel lack of sleep after starting meds . ?We are all so different , could be all 3 reasons . !!

I find it helpful to keep a daily record of what I've eaten and what time ( that can effect sleep,)

What I've done and how I feel physically and emotionally

[PegSue in reply to Mostew]

thank you. I appreciate your response. I realise could be multi faceted. Just trying to make sense and manage the things that I can that might help.

[hunter5582]

Fatigue is the most common MPN constitutional symptom. The medications used to treat ET (e.g., hydroxycarbamide, Pegasys) can have fatigue as a side effect. Conversely, the medication can also improve the fatigue for some. Timing of when the fatigue started is sometimes the only clue about what is causing the problem.

Mazcd provided an excellent resource on managing fatigue. Here are a couple more.

patientpower.info/myeloprol...

mympnteam.com/resources/man...

[PegSue in reply to hunter5582]

thank you. I appreciate your response. I will peruse the links to reflect. Fatigue was the original symptom so found incidentally post op after unrelated back surgery.; Mobility is affected so a good reason too.. onwards

[Scrollernut]

I’ve been on Hydrea for over three years with ET. I am tired constantly and sometimes so much I can’t keep up with any exercise. Can’t find a reason for it other than MPN. I have had Covid as well which damaged my diaphragm so there’s a complication as well with breathing. Who knows?! Lots of naps. 🥴. Good luck. Hope you can find some relief. Not much help I know but you’re not alone. 😍

[PegSue in reply to Scrollernut]

thank you for replying. Wishing you some relief too

[Stripecat]

Hi PegSue

I hear exactly where you’re coming from. I had ET but now have MF and I am busy most days but constantly feel exhausted

It’s tough🤗

[PegSue in reply to Stripecat]

thank you for responding. So hard to know if it’s related but either way needs to be managed so : onwards …

[Arthandiwe in reply to PegSue]

Hey, I have ET that has progressed to pre PMF, and am in Hydroxy and am always tired. I work 40-50 hours a week just to pay the bills, and on my days off I sleep 10-12 hours just to cope. I exercise when I can. I wasn’t always tired like this, it started with the ET. I also have a very persistent headache. My haematologist put me on Hydroxy to try to eliminate it… it worked to start with but now it’s not… I guess he’ll try me on something else. Just know you’re not alone! Hang in there! 🙂

[PegSue in reply to Arthandiwe]

sounds tough, wishing you some respite from the symptoms. Thanks for response

[Wyebird in reply to Arthandiwe]

wow it must be tough for you. What is your haemoglobin level? I’m much better since on Peg.

[Arthandiwe in reply to Wyebird]

Hey, my haemagoblin is around 11, which is mild, so I’ve been told! My fatigue is definitely mainly from my MPN, and maybe the hydroxyurea.

[Wyebird in reply to Arthandiwe]

yep sounds like it. I went to the chemist believing to be anaemic when it was the start of ET before diagnosis

[RazB]

Hi PegSue, I am 54F, have ET & have been on Hydroxy for about 12 years. Like you I’m constantly tired! I try very hard to have some kind of rest when I need it, whether that’s 30 mins lying in garden, bed, sofa it doesn’t matter, I just know that I have to do it so that I can get to the end of the day. I do have long periods of being absolutely fine (months & months) and I can push through the fatigue and forget about it but it is particularly bad atm so I’m trying hard to manage it, I always hit a slump about an hour after taking Hydroxy so now take it at night which is much better. I think finding the right coping strategies is important, I plan my days/work around having a free hour in the afternoon to rest if I need it. X

[PegSue in reply to RazB]

Thanks for reply. I am pretty active and feel somewhat embarrassed at having a moan as others seem to have more unpleasant and unacceptable symptoms. Just working through the accepting and carrying on with life. So much to be grateful for really.

[KLCTJC]

I think sometimes it is so hard to tell what causes the fatigue! I work, have a kid, house, husband, etc! I do know that since I was diagnosed I don’t sleep as well. I can fall asleep but I don’t stay asleep. I take a medicine but it only helps a little. I sleep much better on weekends. I have tried to find a way to deal with it. Yoga at least 3xs a week I think has really helped. Trying to lower my stress which sometimes is a comical thought but I try. Diet is important too. Hard for me to avoid “bad” food at night because my husband is meat and potatoes only, but lots of salads for lunch and lots of water. I really hope you find the right way to manage it for you. But you are not alone!

[PegSue in reply to KLCTJC]

thanks for reply. Lots of sensible advice. Wishing you well with your management and happy napping.

[Wyebird]

I know I couldn’t work not even one day a week. I retired aged 57 diagnosed age 60.

So I suspect it’s a combination of every thing

[PegSue in reply to Wyebird]

I guess it affects us all differently with some common factors that make it useful to share. Thanks for replying

[souplover]

I keep going but truth is, my energy just isn't the same as before I had PV. And there are times when I just feel utterly - and sometimes suddenly - exhausted for no good reason.. Sometimes I lie down for a couple of minutes and just breathe. Other times I try to push myself to go outside for a couple of minutes walk or do something routine around the house.

I'm still working and I walk or bike nearly every day. Maybe that helps, but it's not always easy!