This has recently become a problem for me. I have had PV for seven years now and am 74 so feel lucky to be alive, and enjoying life. I walk regularly but am often breathless and struggle with uphill walking now. Not sure if it is winter related. I am also having to cope with more itching, (definitely winter-related), especially at night which interrupts my sleep pattern. I take Atarax before bed, or Zyrtec and Zantac if it is not too bad and am going for UV (sun bed) treatments, 15mins a week for 10 sessions. I am on Hydrea, have been for some years now, and have not needed phlebotomy for a couple of years, although the haematocrit remains steady (between 40 and 45%). I am not sure whether I should just adapt to how I feel and concentrate on walking exercise, or whether I should push myself to do more. I am recruiting my reluctant husband to help with housework and shopping, which I feel is necessary if I am to continue coping. Any thoughts?

16 Replies

  • Wish I had Lucieboo, going thru the same fatigue as you. 7 yrs P V ,Hydrea,other Meds for a stent ,managed well ,with a few blips ,but just now no energy...trying to decide if I should go to a local exercise class to see if that helps,but worried I might be breathless and weak....have enough to do really ,horses. dogs and my sculpture,no energy to do those things properly!!!Had to have surgery in Nov for carcinoma on my face,seem to have not really got going since then,tho surgeon was first class and all healing well....H C T remains stubbornly high and Platelets too low....depression setting in a bit,this month I will be 77 !! So is it progression of age and P V? Like you ,could do with some positive answers,hope you feel better soon,Spring not long away,tho we have had a mild winter over all,so cannot blame that here,walking is the best ,fresh air ,lovey views,try slow and work up to a good pace,that is my plan.....but always tomorrow!!!Best Wishes.

  • Hi Luciboo and Inca.

    Totally feel the same as both of you. I am 74, ET Hydroxy plus other meds. I get breathless walking quickly on the flat, as for hills ....well that is very hard work. I am not overweight and consider myself quite active. (Although Inca how you manage everything you do I can't imagine.) I don't think we can fight the fatigue too much 'cos we pay for it the next day. Some days I just have to sit down in the afternoon and have a nap, other days I don't need it. It's a strange thing. It's extremely hard to explain to others how you feel, because you look ok. I feel I must explain that I am tired as I have never been someone who sits down in the day. I don't know if you feel the same but I find even my family really do not understand our conditions , and hate to say it but they think maybe I am just 'getting old'..but inside I am really 25...ha ha.

    I have had cold after cold this Winter as many people have had. That in itself pulls you down, I do understand the depressed state of mind. I consider myself very fortunate to have the good state of overall health I have .....for my age...sorry had to add that. So I never ever feel sorry for myself. So this is not a moany post. Just to let you lovely people know I understand exactly how you feel, and you are not alone.

    Soon be Spring . Keep smiling . With best wishes Sandy X

  • Absolutely Sandy,we do pay for a burst of energy,I do know ,but I don't learn !Hubby is brilliant,he makes dinner now as by evening I am 'out of it'!!Does the house and horses too at the moment and shopping ! This morning ,I shopped as well,but now laid in bed ,exhausted. Such a beautiful day,very frustrating to be so tired and not enjoy being outside......bloods are wrong again,my nurse comes to the house each month,he is a friend now ,after 7years...results next day,which is today,H C T high,H G high,Plaquettaire way too low....Dr tomorrow, really concerned what will be the plan now....been on high Hydrea for 4months now ,no change in the results.Not really moaning ,like you,I have been active ,slim and mostly healthy all my life,just finding it all difficult now.Such a help to chat to people who feel similar.Best to you ,Sally

  • Why is your husband reluctant to help? Perhaps more to the point, it might be worth getting your GP and/or haematologist involved in the causes of your breathlessness: could be blood counts or something else entirely?

  • I recommend buying your husband an apron and rubber gloves! 😄😄

  • Lucieboo, Inca and Sandy, Hi ladies, I agree with you all about the fatigue - I have PV and have been on Hydroxy for about 2 years now, am 75, take other meds for other conditions but suffer from dreadful breathlessness as well as the fatigue. I used to take my puppy for a walk every morning but am waiting for a hip replacement operation and that together with the others (breath/fatig) has put a stop to that. I am in Oz and we are having record heatwave conditions at present which doesn't help much either! Still think I'd rather have the heat than the cold. Wish you all well, Sandra

  • Same for me,S W Fr gets extreme heat,no good at all for me ,have to be inside with shutters closed!!! But even the 'normal'French do that.....Hope you soon get your hip op and can walk again,we do need to exercise even gently.

    I do walk with hiking sticks,in case my big German Shepherds accidently knock me over! Good Luck for Op,Sally

  • Hi Lucie boo and everyone else. Well I'm 75 too. Fatigue has been a real issue for me this last year. I have been diagnosed about 18 months with PV. I have been on hydroxia for about a month after sort of maintenance with venesections. Going on hydroxia sent me into a nose dive, especially as I felt so ill, it was hard to tell what was causing it as I had had bugs from August, a history of CFS/ME as well. I do seem to be emerging, I am walking more, very important, but as has been mentioned, pacing is the key. Really understanding our bodies, and extending activity when we can plus resting when we feel the need. Lucky for me my bf is pretty good around the house, it does make a difference. Does your husband understand the health issues you are dealing with? Don't forget you could be anaemic, I am, ferratin v low. I was told if my haemocrit gets low enough I can be put on a low dose iron.

    What a lovely supportive place this is. lovely to meet you all. Be well.


  • Hi Lucieboo, sorry to hear ur struggling with that awful fatigue. I'm the same just now as I'm waiting on a venesection. I find (you probably do this anyway) that drinking a lot of fluid helps, eating pasta, nuts, porridge and fruit help energy levels along with the rest of my food and a treat of course!

    I think exercise is good but sometimes you have to listen to your body and rest. I don't go out on the evenings anymore, I find that if I go to bed about 8, and I still work, I will cope with the fatigue until after lunch. Then if I need to go home, I do and try and make up for hours lost once at home.

    I find that Aveeno, I use the one for sensitive skin helps with the itching along with anti histamine prescribed by GP. Men can be reluctant to do household jobs but tell hubby to imagine his arms and legs were like lead and his brain like porridge (I'm Scottish by the way, if you hadn't guessed already) and tell him to do the housework and see how he feels.

    Take care, hope you're feeling better very soon. Kindest regards Aime xx😺😺

  • Thank you all very much for your posts. I do feel now that I am not alone, and really this is to be expected, makes it easier to accept. My husband did housework today and cooked his own dinner, so I think I got through to him, and I will ensure he keeps it up. I do think it is better for him too and I am appreciative, so I think we'll get there. Saw the cardiologist today and he is looking into my irregular heart beat which may be contributing to the breathlessness and fatigue, but it is difficult to disentangle causes when you have more than one condition: I had a small heart attack soon after my PV diagnosis and when I still had thick blood, and they put in a stent. I get marvellous health care here in France. I wish you all well, keep cheerful, where there's life there's hope and the world is very beautiful.

  • My husband was told never to use sunbeds as he's on hydroxy. He's been told to be very careful in sunlight and to use a high factor. I don't think using a sunbed is good for you especially being on chemotherapy hydroxy.

    I would seek advice on this as it was was husband consultant who warned him of these dangers.

    Do you drink coffee?

    My husband cut out coffee last October he's never felt so good in ages he's got rid of his headaches and extreme fatigue.


  • Hello Tracey

    Thank you. I accept using a sunbed is not too good an idea, but it works, and I have that olive skin which tans easily, so I don't use sun screens in the summer. I only have 10 short sessions and to me it is just like going for a week's holiday in the sunshine in winter, which many people do (I can't as we have three dogs).

    I drink a cup of not-strong coffee a day and my diet is very good, lots of fruit and veg, some fish, eggs, milk, and no meat: was very well on this until the beginning of winter when my energy levels dropped, but I also have developed an irregular heartbeat which is being investigated.

    This disease takes its toll, we have to try to strike a balance to maintain a good quality of life. Good luck to you and your husband.

  • It's an awful thing to suffer from.

    Hope you feel better soon.


  • Thanks a lot Tracey, but it could be a lot worse and I am an optimist, and look on the bright side. It is a challenge and certainly makes you appreciate life and the environment, every day a blessing.

  • My husband is like you he says other people are far worse off. He works full time and leads a normal life.

    We get away as much as we can now.


  • Cheers! The only way to be. Wish hubbie well.

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