Anyone have days when you feel tired from the minute you wake up ?

[rubyrubyruby]

[Bry342]

My hubby has PV and was feeling like this every day. We went to see a new consultant who specialises in MPD. He added an extra aspirin a day to his meds and it made a huge difference! !! More awake of a morning and even been managing a part time job. Still gets really tired but slightly more managable. Xxx

[shellsween]

yes some days good others just like you say rubyrubyruby, Also a lot of nights with little or no sleep seems to happen in batches.

[shellsween in reply to shellsween]

does your husband take any other meds Bry342?

[mac77]

I have ET and I am like this all the time! Some days are better than others, the sleep is a big issue too shellsween or lack of it!

My consultant is not the best so unless my counts are ridiculously high, he constantly tells me my symptoms are nothing to do with my illness!! Might mention the extra aspirin next time I am there though, thanks for suggestion bry342 xx

[Dutchie17]

Hi rubyrubyruby, yes absolutely. I am definitely not the worst case of ET but I do notice that good sleep is essential, I used to need only 7 hours of sleep but now I really do need 8.5 hours or so, otherwise I am tired and listless all day (like yesterday...).

[Geoff_mpnfamily]

I do, I have Poly, and feel like that most of the time.

Me and my wife discovered a good bit of slow roast lamb seasoned with rosemary and garlic accompanied with roast: potatoes, butternut squash, carrots and parsnip, I also steam some green beans or peti pois (if I feel greedy lol) works like a treat.

I feel a bit sharper and full of good intentions. .. lol.

My haematologist told me to stop eating red meats. I said "oh, ok" (I lied lol) nobody takes away my lamb.

I find anything short of 9 hours sleep I suffer more.

[Mwalimu]

I have felt better since have gone on to organic diet. Could be coincidence but at least I feel am doing something.

[rubyrubyruby]

Thank you everyone. It's interesting to hear other people experience same symptoms.

I can have a good nights sleep (8hrs) and still feel really like I haven't slept a wink. I wonder what it is that is causing us to feel like this ?

I am only on aspirin for my ET so can't blame other meds and platelets not mega high either at 850. My consultant did offer me chance to try meds for 3 months to see if made a difference but I have chosen to stay as I am for the time being.

[Tinkerbell13 in reply to rubyrubyruby]

Find this interesting, as my platelets similar and only on aspirin. And agree re med. Do you get night sweats, by the way?

[rubyrubyruby in reply to Tinkerbell13]

Not particularly at night but seem to get very hot easily and sensitive to stuffiness/heat in shops etc. When walking my dogs I end up wearing a t'shirt when others wearing t'shirt, jumper and jacket !!

[linds]

I just had to add my bit - I know exactly how you feel rubyrubyruby! It is awful to drag yourself from bed to bathroom to wardrobe and then all you want to do is collapse on the bed, cover yourself up from the world and SLEEP. My sleep pattern is so wobbly anyway and most nights I will be awake for two/three hours, usually after being dead to the world from 9 or 10. It is impossible to stay awake until midnight as I always did as I begin to feel dizzy, a bit sick and so restless. Some nights I will possibly only really sleep once daylight appears - then the day is long and miserable!!!! All this is so strange.

When my husband commented to our GP that PRV seems to have so many different side effects his comment was 'why be surprised, the blood flows everywhere through the body and effects everything so there will be multiple reactions most probably'. Wise fellow.

Best wishes.

[SteveRupp]

Sounds familiar, batteries seem like they've been removed.....back to bed!

[Swede]

Hello,

I also suffer from funny sleep pattern. No problems going to sleep at night, but wake up at approx 02.30 and cannot go to sleep again, for love nor money.About 06.10ish, when the alarmclock goes off at my neighbours, I am sooo tired and want to go to sleep. The noise of cars and neighbours keep me awake till my partner gets up at 07.00...and by the time he has gone, aroung 08.15 I am a sleep.It all goes quiet and I can sleep until 11.30 sometimes. BUT then half of the day has gone and on the days I go to work, I just have to get up an get on with ....being tired at work. I never sleep during the day and I'm never on the PC or mobile and try to turn of television 1 hour before, going to bed. I don't have any electrical stuff in the bedroom and I try to keep it not too warm or cold in the bedroom.The blinds keeps the dark out. So, where lays the answer?

[nicki2]

i have et since 1994 and on hydroxcarbamide 3 clots to the liver i have to sleep every afternoon for 2 hours and i sleep straight through the night as well which hinders me getting a job as my last job it was only an hour a day 9-10 and it left me without any energy

[Aime]

Hi Ruby, I have PV and can sleep 10 or 12 hours all night and still wake up feeling like I have been running about all night - totally fatigued. My hc is sitting at .44 just now so feeling ok but will often fall asleep in the afternoon when at home. On holiday I slept 12 hours first night, then feel asleep in the afternoon for a further 3 hours, then back to bed at night again for about 10 hours!! Regards Aime

PS I like the doc's comment that blood goes all round the body, so lots of parts can be affected - makes sense!

[NewBloom]

Very familiar! Especially when on early shifts and up at 4:30am, been finding it a major struggle. Starting to wonder if I'll be able to keep it up in the long term.Still feel it on other shifts but the earlies are the worst. Seams many of us feel the same way. x

[ABman]

My symptoms keep changing with my PRV, but fatigue is pretty constant, as is itch if I get wet, which can be like being attacked by dozens of mosquitoes at once. I am grateful that I didn't develop PRV before I retired, as I know I could not teach anymore. I'm on meds for a heart attack as well, and use Xarelto for a blood thinner -- just once a day, and a small pill. Highly recommend it.

Best wishes to all,

ABman

[Hidden]

Oh the tiredness! Feel trick is just to acknowledge it & practise self care as much as possible. Snooze when you can or simply rest awhile. I find diet, meditation & walking help also drinking gallons of water. I work 2 jobs,both part time; one very physical with lots of lifting, the other sedentary. Just being aware of when I'm reaching burn out & then booking a hol or weekend away seems to do it for me. My PV is controlled with bi monthly Venuses (that's what I call them cos I love them. ...not!) however they're struggling even getting 250 out of me lately as my vein are hardening apparently. Errrr going in thru my feet has been bandied about as an alternative. Anyone else experienced this?