MPN Voice

ET fatigue 😪😪

Hello, im 8mths diagnosed with ET.

I’m 46, overweight 😱🙈🙈 and only on aspirin n vitamin supplements.

At 1st the fatugue wasnt too bad, but the last few weeks its been horrendous. Just the thought of example hoovering makes me

want to cry. I used to be so house proud and its getting me down.

I live with my partner who works long shifts, my 27yr old daughter who works full time and my 3year old gorgeous grandson whos bonkers!

So life is pretty hetic.

Im a neonatal nurse working fulltime, 3 13 hr shifts a week n most weeks do a mix of days and nights and extras as the staffing is so bad( and the overtime money good!)

I’ve just turned down the opportunity to apply for a sisters post( been as good as told the job would be mine) as dont think i could cope with any extra stress.

i’ve read exercise helps with the fatigue so this weekend joining the gym to go swimming.. as need to loose weight asap to see if this helps with the fatigue.

I have bone pain, itchy driving me mad feet and hair thinning.. beush is fullevery few days. Also have. small lumps on my head that the Dr is just waiting n seeing what happens with them.

How do you all manage your fatigue? im

hoping if i loose weight that will help massively, but im also scared this is me for life n have visions of giving up work n loosing my house etc etc etc!!

You know those 3am thoughts ..

Sorry for the essay just so down with this allright now.

Any advice would be brill.

Ps my platelets have been stable the last few mths n had bloods ysday n all similar.

Thanks

Tara

12 Replies
oldest • newest

Hi Tara, welcome to this forum where you will be in touch with a lot of lovely people who will support you and your family. I have Polycythaemia but the fatigue is the most common symptom associated with all MPNs.

If you go to the MPN Voice website, there is a lot of trustworthy advice regarding fatigue. Yes, exercise does help but I find sometimes my fatigue is so bad, I can crawl out the door to go for a walk. Other times I can push myself and it does help both mind and body.

Other advice we have been given is to eat as healthy as possible and drink plenty of water but you still need treats too! I think your family need to buy into this too because you’re working, plus being a housekeeper, cook and Grannie. They need to do their bit and help out and understand that if you say you’re exhausted, you are and are not just a bit tired.

I recently retired on grounds of ill health but I’m 60 so older than you! While I was still working, I paid one of my friends to clean for me 3hours a week and that took some of the pressure off.

Keep in touch and let us know how you are getting on. Every year, forums are organised up and down the whole of the U.K. if you are in the U.K., attending one is something you won’t regret and there is a group for families too which really helped my hubby understand. Maz, our editor, organiser of forums and a link to brilliant medical advice, can help you too.

Take care, kindest regards Aime.xx😺😺

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Hi, just a quick hello, dont have any advice but I can offer lots on empathy, my mum used to have an immaculate clean house, good job she's not around to see all the dust. I can just about manage to do some cleaning when I know someone is coming round, so at least it gets cleaned occasionally. I used to have a hectic life but I have slowed down now as I realise I have to budget my energy. My brain still wants to do lots of stuff, but my body says "no way" takes some time to adjust, but you do have to be realistic with what you can do.

Regards & hugs

Raff

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Hi Tara

Magnesium cured my fatigue in 3 days, what vitamins are you taking, have you had your thyroid checked, a lot of med's deplete magnesium.

Peter

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Hi there Tara. Welcome to this rather exclusive club! I'm 60, diagnosed ET 2012, on hydroxy and aspirin.

The best advice I can give is REALLY cut down on sugar. The first thing I noticed when I did it 4 years ago is the itching went and even now I know when my sugar intake goes up cos my belly starts itching again!! I also lost a stone in weight when I cut the hidden sugars... in processed food (pretty much anything in a jar, can or packet that has more than 3 ingredients!!) and wine mainly!!

Drink loads of water... that helps my body function so much better and again when that isn't good I feel rubbish.

The fatigue is a tough one but less sugar and more water definitely helps.

All the best Tara... and welcome to the group

Liz xx

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Hello. I am very similar to you ET - 40s on aspirin. I find that the fatigue comes and goes - things that help are exercise (feels counter innuative but definitely helps) cutting back on alcohol (the hardest part) and diet. I have also learnt to pace myself - so if I have busy work days making sure I have quieter times to recuperate. I also keep an eye on my b12 and iron as I have problems with both. The trick is to know when to push yourself and when to rest - I’m not always good with that. It is all manageable - honest. We can still work and do the things that we want to do with this. We just have to be a bit creative about how we do things.

Wishing you the best

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Hiya. Welcome! Lots of good advice here - water, diet, exercise and pace yourself. And that might mean some readjustments. Perhaps someone else does the vacuuming and maybe little bonkers man gets to understand that Granny is for quiet and gentle things.

I wanted to add two suggestions. First, I don’t know where you are based but my haem team referred me to the fatigue clinic at the hospital’s cancer unit. Their focus was on understanding trigger factors for the fatigue and learning to manage. My take away points were that repeatedly ‘pushing through’ the fatigue was unhelpful and trying Mindfulness was very useful (i’d Recommend Dr Mark Williams book which comes with a CD. Try Amazon)

Second, if your symptom burden - fatigue, bone pain, itching etc - is becoming very impactful raise it with your haem. It maybe that starting treatment would be really helpful.

Good luck!

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Hi Ladydriva, you couldn't have come to a better place....and know you have had some really good replies already. May I echo the ones who say do get extra help (even if you were 100% healthy, sounds like you are doing far too much). Also cannot agree more with the 'cut out sugar' one, it is so important, and is very often 'hidden', without us realising it. To start with, you may get withdrawal symptoms, which actually can indicate how strongly we are attached to it! Also recommend, along with the vitamins, some Turmeric capsules (organic, if possible). Think, as you give up sugar, your weight will fall away, so a double bonus! Very best wishes and hope you will let us all know how you get on....Tinkerbell

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Hi Tara

Sorry to hear you are struggling with things - your life sounds super hectic! You’ve had some great advice (it is tricky to get a balance with this ‘pants’ condition) When I look back at when my symptoms have been bad, it has been when I have been particularly stressed, or struggling with sleep, which means you end up in a vicious cycle!!

Exercise really does help with fatigue + for me swimming does the trick - pulls off weight (I quit smoking to ‘manage my risk’ + turned into a whale!!), helps with stamina, + clears my head (I can ‘zone out’ hitting laps)

You don’t say what your platelet levels are, but I had thought I was doing ok until my levels started dropping (after a few glitches starting hydroxy) and I defiantly now feel more ‘with it’ (though I wouldn’t go so far as blitzing the house - a lick and a polish suffices)!

Please try not to let things drag you down - all the very best

Anne-Marie x

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Good evening Tara.

Now that you have time to consider others story's perhaps you could consider taking the best parts and making it meld with your own.

Maz is very good at guiding you through the complex concerns.

It's so like a mind field.

I have been diagnosed since September, I am 64 a retired nurse and midwife for forty years petrified I had another disease to manage on top of my diabetes.

I felt so fit and I thought the powers that be had it wrong.

You know your in trouble when you see a clinical nurse specialist behind the door.

Now six months down the line , I have bought a salt lamp, do my walks and gym, try to remain calm, become boosom friends with team and go on holidays with a camel in tow for all the water I need ha ha.

A sense of humour is a must.

Keep in touch and don't forget to smell the coffee......

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Hi Roger

Are you taking magnesium, if not read this.

greenmedinfo.com/blog/magne...

Peter

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Hello,

I have had ET for 10 years now and the fatigue is the trickiest thing to explain and manage. I have just been introduced to the 'spoon theory,' where you measure daily activities in spoons and take from your daily allowance. For example, making a meal and eating it costs 3, being at work 4, getting dressed 1. It may be worth looking into via the internet?

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Hi Tara. Sorry yo hear that fatigue is getting you down.

I do find that exercise helps and certainly finding exercise that you like can make all the difference. I don't always feel like going to the gym, but after I go I usually feel so much better.

I do need to pace myself as others have said here. If I have a really busy week I'll have a quiet weekend or vice versa. This helps. If I push it I'll feel it for a week... not that it stops everything it just means I fall asleep in front if the tv at 830!! LOL!!

Take care.

Katherine

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