Any tips for dealing with fatigue?

[queeniethequeen]

Thing is I dont really know if this is long covid, perimenopause or ET but I am knackered. I woke up feeling like getting on top of the housework which has been piling up. But I couldnt get up, kept falling back to sleep. I made myself get up to run a quick errand about 2pm. Came home. Nearly passed out after walking up the stairs. Went back to sleep for a couple of hours. Got up went to the supermarket. If it wasnt for the trolley I would have made it round. Feel like I need to go back to bed again. My limbs feel like they are made of lead. Anyone had this? Got any tips?

[D1i2a3]

Think that’s just part of the conversation if I do too much one day the next day I can’t do a thing you probably did too much the day before it’s hard as some days you are ok try drinking lots of water I get vitamin d from doctor hope you feel better tomorrow Diana

[Adlon57]

A male version of exactly the same!🥴🥴

[Adlon57 in reply to Adlon57]

Really tired😤trying to get up, early enough back to sleep! I stare at the clock, yes I've had my eight hours! Legs like lead, real dozy🥴could it be the aspirin I've just been prescribed to thin my blood😗warmish outside!🥱COME ON GET UP, LUVELY DAY OUTSIDE!🙃had my morning shower! look at my swollen feet [definitely a side effect of aspirin] bung in my daily shower of pills, stick to my diabetes 2 diet, litres of water, but the rest of the day, breathing heavy! lethargic! Evening time, not the slightest change since I woke up!🥱FATIGUE?

[krotsida]

Is good to take a multivitamin everyday too.

[Trocken]

I have a few things that may help:

I found this presentation really helpful, it made me think a little differently about it.

youtu.be/V721Hf15oEg(Not working as expected?)

The spoon theory is really helpful for being able to explain fatigue to work colleagues, family, friends and my kids, it’s helped me pace myself and to stop feeling guilty!

butyoudontlooksick.com/arti...

Aside from that have you had a full blood count recently, I would suggest you go to your gp and speak to them about your debilitating fatigue. When I get so fatigued there is usually another reason, low b12 levels and more recently very low iron levels, both are treatable with medication and make one hell of difference.

I’ve also find a really good multivitamin helps, I’ve found that vegan supplements have higher values than regular multivitamins, my vitamin levels are low across the board despite a balanced diet including meat and fish!

I hope you begin to feel more like yourself again soon with a little bit more energy x

[ksos in reply to Trocken]

The Spoon Theory is a perfect explanation of how life can change when you're sick. Thanks for the link. Kim

[Magentas in reply to Trocken]

Thanks for sharing these, the Spoon Theory is wonderful. Nailed it!I am halfway through the video which is helpful, too, but if anyone reading this is a little impatient like myself I suggest they start at 13.40 minutes in 😊.

Thanks again, Trocken.

[Trocken in reply to Magentas]

Your very welcome, I’m so pleased your finding them helpful, I was fortunate to attend the presentation in person a couple of years ago it was great! As for the spoons theory I was only made aware of it a few months back by a work collegue, we had a well-being afternoon and talked about it as a team, myself and a collegue (who has long covid) both struggle with fatigue and as nhs staff non of us are good at pacing ourselves, so we’re all talking about spoons, what a difference it’s made, it changes your mindset, I’m not saying I’m ‘wiped out or tired’, I’m now saying ‘I’ve got one spoon to the last the afternoon’ it becomes a more positive way of thinking and people get it! Xx

[Simris]

Unfortunately I feel exactly the same and find this fatigue so debilitating, I force myself go for short walk every day to get some fresh air, I also would love some tips on coping with severe fatigue, if I mention to my haemo he just says it's side effect of ET as well as meds.Any tips most welcome.

Phyllis x

[netty64]

Pace yourself and make sure you have a good diet, I also take magnesium and zinc which after about 3wks made a difference and I was spending less time in bed and feeling less exhausted.

[lhasedoglover]

Same here. Yesterday I was so tired I had to go to bed again at two in thé afternoon. Unexplainable fatigue.

Now it is European foot starting 9 pm. If I want to watch I will have to go to bed in thé afternoon.

Not normal for a 53 old person.

At this Moments i feel a bit sorry for myself.

Hope it betters for you as i know how hard it is.

Love and understanding from Belgium

[Magentas]

I am not sure what brings on the ‘fatigue bomb’ as IrishSarah so aptly puts it. My sympathies.. it makes me feel sorry for me too.

I’m on my 7th day now, useless ALL day. I’ve had it once before and it was put down to post viral fatigue (had a tummy bug) and it vanished on the 8th day….to just back to the normal fatigue by 3 or 4pm.

This second time it was a half bottle of wine and most likely too much coffee, too much crazy activity and cumulative dehydration the following day….that’s a very mean payback!

I’m wondering if it really was the dehydration that kicked it off 😕

[Trocken in reply to Magentas]

I do think dehydration has something to answer for, some morning I wake up feeling like I’ve been hit by a bus, my legs feel heavy and I’m exhausted dragging myself out of bed, those days I’m noticing that I’m really thirsty. I had to stop drinking all together, even after one class, I’m struggling with dehydration and heart palpitations, I’m such a lightweight!!

[Magentas in reply to Trocken]

Yes, I’m coming to know that feeling well and I actually did read yesterday that the reason it’s imperative to drink a lot of water is because when your blood is thinner it is less work on your heart.

I have become such a light weight too, I am sure age, as well, has something to do with it …I used to be quite a heavy weight drinker 😄 but since this last fatigue bomb I’ve decided to give up completely, it’s so not worth it. Funny thing is last time I had one of these it took eight days for me to come right and it’s been the same this time. Today, 8 days later, I finally feel normal, well, normal for someone with my usual end of day MPN fatigue haha, hurrah, oh the joy!!!

I too have been enjoying palpitations 🙄, a new thing, but there’s no way I can give up my coffee.

[Trocken in reply to Magentas]

A very familiar tale, I only started drinking coffee last year at the age of 39 and have to say along with chocolate their my only vices, alcohol was easy to give up in comparrison! How strange that you body is consistently taking 8 days to recover from the fatigue, I’ve never considered tracking it, it would help the mind to know!

[Magentas in reply to Trocken]

Because those 2 times (only) have been so severe, like, horizontal all day every day, it was easy to track. I guess my regular fatigue is like most others, knackered by 3 or 4…some days better than others. If I have morning fatigue I do find exercise definitely boosts me for the rest of ‘my’ day.I’m pretty new to all this.

[ciye]

Sadly it's ET, I take magnesium, b12, vit D, and zinc.

[Elzbietta]

Sorry to hear you are struggling with fatigue. I agree it’s the ET and medication fir me find I have to pace myself and like others as soon as I have a big day or night I suffer severe fatigue. Saturday morning I didn’t get up until 1115 am after 11 hours sleep! I tried but I just couldn’t get up. Really debilitating tiredness.

I agree keeping hydrated seems to help and healthy living. The minute I slack off my healthy food, low alcohol and regular light exercise the fatigue is much worse. I take Vit D also.

[Cja1956]

I found a functional medicine doctor and she put me on methyl folate a few weeks ago. I also take omega-3. Interestingly enough, I’ve had weak legs and balance issues for years , but I started going to physical therapy last month for a herniated disc, and I feel like a different person. My platelets as of my last visit about 2 weeks ago were at 800,000. I’m post ET MF. I hope you find some relief soon.

[SoledadBarcelona in reply to Cja1956]

Methyl folato, what for? Who is your doctor, please? He or she understands ET? Thanks

[Cja1956 in reply to SoledadBarcelona]

So the doctor who recommended the methyl folate is my primary care doctor. It’s to increase my energy and help me with my brain fog. She told me to clear it with my hematologist to see if it was OK and she said it was fine.

[Magentas in reply to Cja1956]

Hi 😊.Interesting, I looked it up and it scared me off. But maybe I should put this to my haematologist now.So very glad you are feeling better!

[doglover49]

i have just recently been diagnosed with E.T, for the last couple of year i was putting everything down to menopause/perimenopause and kept thinking it would pass, now i know i have this am wondering is this it now?? feeling so tired all the time? it's terrible, i am 49 and just feel done, everything is such an effort, i used to have a nice tidy house but now i just don't have the energy, i work and i am hanging by a thread to keep going as i find it so hard and tiring, is this the future now?? i know exactly how you feel

[givingITMybest]

My primary physician referred me a cancer support doctor who I'm working with. I've read through the other replies and can relate. Since my ET diagnosis and treatment with hydroyurea I would be good all day but felt a crash about 3 or 4 PM Told my husband just feel like a dishrag. This was consistent for 1 and a half year and then in the past 4 months things changed and some days I feel tired to the bone as soon as I wake up. The fatigue levels are greater and unpredictable. I've had all the blood tests checking fit. D, B12, iron etc. All are good. I'm changing hematologists because mine gave me no support. I'm going to see a MPN specialist in two weeks. The support doctor said not to rest all day, but rest for 15 minutes then get up do something, maybe walk the block outside, rest and repeat. This is not easy, but I'm trying. I hope you find relief and truly my heart is with you. Everyone on this site has given me comfort and I feel like I found "my people".

[Magentas in reply to givingITMybest]

I think that rest repeat thing is really great advice. I think subconsciously I’ve recently been coming to that conclusion but now I will definitely act on it. Thanks!

[souplover]

I have PV and it's the same. I confess to also feeling sorry for myself when the fatigue is bad. Every morning, I feel like I have to climb back up out of the well of fatigue. I wake up feeling zonked. And especially - as someone else commented - if I've done something stressful the day before. I'm realizing that emotions (even good ones) are more stressful than physical work.

The other day I had a stressful meeting for work that went well. Afterward, I was so exhausted I couldn't do anything. It's a profound fatigue, not normal.

I hate to repeat myself, but I am learning to 'manage' the fatigue. My hematologist told me, "Go outside, get oxygen, exercise." And that has saved me day by day, though it doesn't take the problem away.

When I'm having trouble starting the day - or the exhaustion just lands on me - I try to get up (with difficulty) and just do something easy, like an easy stretch or straightening up a bit. And I try to go outside and take a few deep breaths, go for a very short walk.

And once/day, religiously, I get out for a long walk or a bike ride. Something aerobic.

Most of all, I try to stay fully engaged in life. At age 72, I took a new (part time) job that was important to me, I babysit my granddaughter, I'm engaged as a climate activist. I do have to push myself to do all of this! And yes, it's a struggle....

Sorry for the long answer...

[SoledadBarcelona]

Yes, I felt the same. Fortunately, I am getting better and better today. I checked my thyroides, my microbiote and cromosomes. It was due to the thyroiditis what was affected by microbiote and it altered the cromosomes. Cromosomes are the core of the energy. Think about and check your root cause. Good luck!

[Kari1961]

I have Jak2+ PV and take Hydroxy. I have short periods of fatigue, but nothing debilitating. And I'm in agreement with Simris and others who have mentioned. I just make sure, whatever the weather or how tired I feel, I get out and about for a breath of fresh air and a short walk around the block - it doesn't have to be a long route march... just something invigorating. Or do something mediocre around the home - sort a closet, cupboard, drawer - just do something to focus your mind away from the over whelming tiredness.

I'm approaching 60 and have been self-employed since 2013, and it's one of the main reasons why being self-employed has benefited me... I don't need anyone's permission to get up and go out for a walk.

You just have to make sure "Your Get-Up and Go" doesn't go forever.

[Wyebird]

Oh dear the only comment I can give is that I often feel good lying in bed and plan my day only to get washed and dressed and then need to do absolutely nothing. Now I now that is ET. It’s not premenopausal. I haven’t had Covid.

Good luck