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MPN Voice
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Just want to snap out of this

I go through stages when I am so exhausted I can't seem to do much, usually complete rest eases this after a few days and I'm back to normal. Not this time though, it's been two weeks and still I'm exhausted, I make sure I wake up early, I do light exercise, I try to eat well yet come early afternoon my body starts to go into hibernation mode, I get so tired, irritable, headaches and just need to sleep and this makes me feel worse when I wake. Why is it taking so long to get over this. I still work work shifts and always feel worse after nights so maybe this doesn't help.

Does anybody else get these bouts of extreme

I'm 43, have ET and been on Hydoxy 1500mg and aspirin for about 5 years



8 Replies


Ive been in the same boat lately, had a series of bugs one after the other in August, totally drained me.

Felt like a few days total rest would sort, but like you I work and I just dont feel right taking time off ill because i feel tired.

Had a couple of weeks holiday and this has helped.



Hi Stevenjust

It must be in the air. I have had fatigue for the last week and its driving me nuts. I feel completely spaced out, dizzy and useless. I too have ET, Hydroxy x 2 daily and aspirin. Just been for my appointment with my Consultant this morning and he has asked me to half my hydroxy for 4 weeks as he is not happy with my neutrophil count, plus I have had mouth uclers for 8 days and counting. He wants me to have a blood test in 2 weeks and see him in 4 weeks. I too work full time and I am struggling, every time another meeting pings in my calendar or I am handed another project I groan inwardly. I also don't like taking time off work as it would let a lot of people down, but I don't know how long I can keep this up, I just feel like bursting into tears. I ask the Consultant could he give me anything to give me more energy and he said there isn't anything. I hope you feeling better soon and I hope I'm not far behind you. Take care x

Hi Paul glad a break helped. I always feel better on holiday, that's why I know I could cope with this condition if I wasn't working. Take care


Im lucky i can sometimes work at home, i find this helps a lot, i think its a combination of factors.

1. I can 'dress down', feel more relaxed

2. The lighting is less intense (no fluroscent tubes)

3. I can 'chill out' at lunch, even get 40 winks if needs be



Hi Stevenjust I can`t help but think the shifts you are working are the key to this tiredness, apart from your condition. My husband worked shifts most of his working life (he is retired now) and he was often tired, irritable, out of sorts etc., and he was in rude health. He always complained that shifts were not good for the body and it seems that some in the medical profession are now coming round to this. For him too, nights were the worse, but then the early shift didn`t help much either, getting up at 4.30am to get to work on time. If there is any way you can come off shift work I would give it a go. Good Luck.


Hi Justin .maybe a complete change ,of diet and routine would help.give your whole system a cleanse and make over ..I did home made soup ,( every vegetable especially tomatoes )'with bottles of water ,fruit ,for a week ..then I started my new eating ..fruit and banana for breakfast ,, Only fish and chicken ,with home made meals ,eat lighter lunch .you won't get sleepy in the afternoon .drink lots of juice with honey added to it for a pick up ,,give up packets and tins ,,buy fresh ,it gives your whole system a holiday ..

We all need a break ..start at home ... Twinkly. X


hello Justin yes I have times like that too ... There is no rhyme or reason to the fatigue it seems it can be a day or so or longer period and then passes ....... So don't be overly concerned it does happen .... And will pass again ......Just rest much as you can lots of water careful diet like Twinkly says .....I find all the time I need to have a perimeter that I can work within energy wise anytime I go outside that box it takes some time to recoup ... Sometimes you have no choice on that of course ..... So hang in there you will perk up again soon. We ET pals can have empathy for each other.


Hi Justin,

I work shifts and have been struggling with fatigue, itching skin, headaches and everyday by 7 pm cant keep my eyes open, just come back from Barcelona and whilst on my hols I had energy, felt pretty good for the whole five days, even forgot about the ET as so busy enjoying myself, Iwas trying to understand what is has changed - for me the weather affects how I feel, always feel lousy in winter, and tired, but like you ,eat healthy and have exercise, the one thing I wanted to add, ever tried taking your medication at a different time of day - when moved my HU to evenings, my general welbeing changed for the better during the daytime which broke the feeling lousy pattern, also can you talk to Occ/Health re; your working pattern with having an MPN? best of luck, hope it works for you



Hi Justin, sorry to hear about your extreme fatigue. I think we all have every sympathy for you and understand totally what you are going through. I do work full time through the day and the only way I can continue to do that so far is to go to bed early every night and sleep 11-12 hours. Quite often this is not enough and when I come home from work, I will sleep 2 hours and go to my bed at the same time as usual.

Sometimes what I eat does seem to help - energy from pastas, bananas, nuts, fruit, etc but other times not. I think it is trying to find a routine that suits you and your illness - I have PV. Thinking of you. Kind regards

Aime x


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