MPN Voice
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ET "Fatigue Bomb"

It's funny you know, when you have an MPN you think that you have adaped to the fatigue bombs that hit you. But when they hit, it still surprises me nearly 3 years after diagnosis. Today at 2pm I was totally knackered - dead on my feet and I thought that I would have a lie down for 30 minutes. 2 hours later I woke up and was still no better and I lay there reminding myself that it's these times that you just have to roll with it.

Mark

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Hi Mark, I completely like so many understand what you are describing. I’m newly diagnosed with ET & Mild MF - 4 mos. I’m still trying to find my balance regarding the fatigue. But like you I have those days where I describe myself as being narcoleptic, because nothing can prevent me from passing out. It’s as if my mind and body simply shut down and a nap turns into a 3-4 hour sleep. With another “nap” as a chaser, lol

For the semi tired days my dr gave me adderall to help give me a boost, but on those shut down days I don’t even bother with it because no amount of anything will prevent my nodding off.

I drink plenty of water as many have suggested and have begun increasing activity to help but boy on those random days I am just out.

Christina

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How true Christina and Mark..I am just having a 'bomb out' now.....it's a beautiful day ,I wanted to be in the garden,no way,in bed now about to crash totally,hubby had to help me get here....Best to Both Sally

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Hope you wake refreshed Sally.

M

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Haha - hi Christina - yes a nap chaser!! I forced myself out of the bed and took the dog for a walk to try to clear the fatigue codwebs!

M

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So much like you all!!Yesterday the only thing on the agenda was grocery shopping!!

But it ended up being a nap all day ... I have found out since first diagnosed in March with ET & Jak2 ... to just roll with it. Ended up with 2 hour (two) naps after sleeping 8 hours during night.

I have tried to exercise through but my experience .. just go to bed!!

So by 6 pm I was ready to tackle food shopping.

I find no use to complain .. just nap as needed..

Please dear folks be kind to yourself & listen to your bodies.

I am 67 & take Hydroxyurea 500 mgs 3 Xs week ... plus Plavix .. ❤️❤️❤️

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Yes EllenKay - sound advice re listening to our bodies. As I said to Aime, my body this morning is telling me its all ticketty-boo so am hoping for a good day.

Cheers

Mark

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hi ellenkay

i too have et and jak2. was misdiagnosed with pv with second hematologist and now on my third hema. i am a relatively healthy 75 year old vegetarian and i think that has enabled me to be healthier than most with this disease. i am retired and have learned to pace myself with daily activities. my main complaint is extreme sun sensitivity and living in florida doesn't help. but i dont take any hu or other drugs because i am hypersensitive to those as well. would like to compare notes and symptoms with you. take care, glenda

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Hi Glenda, yes I would like to share & compare our notes & symptoms.

I have lots of other medical issues ... Heart Failure, type 2 diabetes, coronary artery with 2 arteries blocked at 50% ... which is on moderate... & chronic osteoarthritis of my knees.

My main complaint with ET is how fatigued I am.

I saw the hematologist on Monday. She did more blood work & I have Vitamin B12 deficiency ... I was put on oral B12 & repeat test in Month. Hope it works.

I live in Ohio near Lake Erie ... I have been retired about 7 years. I try to stay active with walking ( slowly & not far d/t Heart Failure) ride my recumbent bike & do pilates.

What do you do to keep active?? How do you manage the fatigue??

So good to meet you.

Ellen

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hi ellen, gratefully i have few other ailments, due partly to being a vegetarian for thirty years and now partly vegan and stay away from most processed foods, canned or packaged and i really do think it makes a difference.

you might check out l arginine which makes the blood vessels more flexible, to allow blood to flow better and allow smaller clots to pass thru. i also take plant based iron, no constipation with this kind. and definitely vit c, b, e and d. hope this helps. garlic and ginger are especially noted for e.t. so keep me posted, and take care , glenda

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Thanks so much .. I will check it out 😊

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Every sympathy, bomb is such an accurate description. I totally agree when it drops you have to give in as you can't even crawl out of the door!!

Sending you a load of E hugs.

Kindest regards Aime xx😺😺

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Thanks Aime. I have woken up today feeling pretty refreshed, so am hoping for a good day.

Cheers

Mark

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So agree with the comments.

After 13 years with ET (Jak negative, Calr positive) and on Hydroxycarbamide, I still get this fatigue bomb, like hitting a brick wall and cannot do much or have a lot of interest for anything. Other days are not too bad, better in the mornings.

Unfortunately, I do not sleep well and I seldom nap in the day otherwise I know I will not sleep at night.

This seems to be getting worse with restless legs and cramp probably due to lack of iron. Many early mornings I've heard the dawn chorus and haven't even been to sleep.

Luckily, I have retired so can pace myself during the day. Anyone else having difficulty sleeping? I do not want to take any kind of sleeping tablets.

Judith

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Judith , I also have newly diagnosed with Restless Leg Syndrome & mild sleep apnea ... due to heart failure the insurance has approved a CPAP machine. I have used it 22 days now.

I thought the CPAP would help me not be so tired during the day ... but sorry to say no. It all points to ET being responsible for all my fatigue.

Sorry to hear your RLS is keeping you from resting & you have a difficult time of sleeping & resting. Hopefully you can see a specialist to help solve the issue so you can rest ❤️

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EllenKay, I find eating 1/2 a banana befor I go to bed helps with restless legs. I’m happy NOT to take meds’ for this. Try it, it may work for you. Hope so! Jan x

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Thanks Jan ... will try it ... sounds easy .. thanks

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Gee Judith - I'm sorry to hear you have RLS. Re sleeping I was reading a travel article a couple of months ago re sleeping on long haul flights (I'm in Australia). This article talked about the option of taking melatonin tablets - melatonin being a natural sleep hormone. These are available over the counter here in Oz, so it's something that may assist you in getting some sleep at night.

Cheers

Mark

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I was just at a big family get together today & 2 people say they use melatonin to help them sleep.

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hi katy

we met via this forum a few months ago and you are apparently a snowbird, wish i was too. at any rate, are you back in florida yet.? it is still hot! i have to stay indoors nearly all day. venturing out only in early morning. cant wait for fall to finally arrive. hope to hear from you soon. glenda

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Hi Glenda, yes I am always extremely appreciative of being up north for summer. Even those days in the mid-80’s but with heat indexes in mid to upper 90’s get me ill. I can’t imagine how we’ll cope when we’re too old to escape the summers. And it must be awful for you. I do keep my iced water fan in a cooler bag with an ice pack, have an auto start to get my car cooled before leaving indoors and have a handicap sticker for days I absolutely have to park close to doors. So I’d recommend you try those. I’m forever grateful for the info on the spray fan water bottle which I even had to use indoors at an event as it was so hot. But to answer yr question, I hope Florida temps are better when we return in November. Take it as easy as you can. Katie

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thanks katie, glad to know i share that particular bothersome sensitivity, was beginning to think it was because of old age which i cant remedy :+)

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It's hard to roll with it though when you keep being told it's nothing to do with the disease or medication, again I have been told it is probably hormones! I can feel my strength ebbing away 😩

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Hi Bridie123 - yes - all I know is that I didn't get fatigue bombs prior to diagnosis, but now I do. So I will now listen closer to what my body is telling me and deal with with the fatigue bombs if and when they happen.

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Hi all, I have PV and get the fatigue bombs as well. Unfortunately my doc says my numbers are fine my fatigue is from something else. I printed out a research report showing that 84% of PV patients complain of fatigue. I also have fibromyalgia which has fatigue as well. I still work full time, trying to push thru and find a balance. Good luck to everyone! Hugs!

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Hi Coco'65. Yes- I work full time, but will commence long leave in 8 weeks prior to retirement, so I'm hoping that finding that balance will be easier.

Mark

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I have had ET for Eighteen years now and as I am getting older these bouts of tiredness are getting worse. I have to push myself sometimes. I just lye down for half an hour and it seems to fix me. I am finding my legs are getting stiff as if the blood doesnt go through them enough but the doc tested them for pulses Etc and said they were fine but there must be something causing it.

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Hi Pennypen. Yes - I too have to lie down, but that acceptance is only a recent thing, as I would try to push through. But doing that is false economy and you have to listen to your body and go for a snooze. Re your legs, I'm not sure what it is - it sounds like you have had all the usual checks, but perhaps go back to your GP if it continues.

Cheers

Mark

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Hi Mark

Magnesium cured my Fatigue in 3 days, we all crying out for it.

greenmedinfo.com/blog/magne...

Peter

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Hi Peter. Thanks for that. I will pop down to the supermarket and get some. Did the magnesium interfere with any medication that you might be on?

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Mark, do not go to the supermarket, The best and one we take is Chelated Magnesium Glycinate called Doctors Best, buy online. The supermarkets and all the health shops sell magnesium oxide, it's a laxative and it's rubbish.

Peter

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Thanks heaps Peter. Much appreciated.

Cheers

M

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Hot humid weather almost guarantees I get hit with a fatigue bomb.

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Hi Jacki - we are just about to go into summer here at NSW. Hopefully being on magnesium might mean that I can side step fatigue bombs this summer.

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