Hi, does everyone have a lot of up and down days?

Hi, does everyone else have a lot of up and down days. I have PV and have to get a ct scan to exclude lymphoma as having night sweats as a new symptom. Last Wednesday when I saw the haematologist, I had a very frank discussion with him and got my questions answered. But today I just want the ct scan out of the way and know what I am facing! Am I just a wimp??

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  • Yes. I have a lot of up and downs. I often feel like I have the flu. More bad days then good right now.

  • Yep good days and bad here too!

    Sometimes I am so tired and my whole body aches I just want to stay on the sofa.

    I can barely keep awake in the evenings beyond 9pm too.

  • Although I've been diagnosed with PV for two years, I don't yet seem to be getting any of the symptoms that have been mentioned elsewhere on this site (and long may that continue......). Are you a wimp ? No - you're human and reacting in probably the same way most others would.

    Now - going off subject just a little - if anyone's watched the latest 'advert' from Macmillan Cancer Support...... I saw it last night whilst washing up and it stopped me dead in my tracks. At the end of it I had tears rolling down my face. Does that make me a wimp ? Dunno - I'm human - but if I am, I'm not ashamed to admit it. With the mix of emotions we all are having to go through on our journey it's just something we have to try to get a handle on.

    My prayers are with you with what lays ahead; be strong, be brave, be a wimp if you want but above all - be yourself.

    God bless ;-)

  • Thanks guys - I really appreciate the time you have taken to reply. It has cheered me up and made me more positive. I am so glad this blog is available as I don't want to keep worrying family. xx

  • Hi RubyRubyRuby, Most days I have the same as you! I had fatigue before being diagnosed and given treatment (Asprin and Interferon) still early days for me but fatigue seems to be worse now I'm back working full dayshift...... becoming worried to be honest, almost everyday seems a struggle at the moment. Time will tell!

  • Hi all Fatigue, hot sweats (day and night), flu like pains, itching etc all familiar. Do not worry blessedwithsix my haematologist happy with my progress as bloods have now stabilised (PV) with 1g hdrox day (2 tablets) + aspirin and statins although symptoms (above) not improved. I have just been advised by my haematologist that I might have an opportunity to be part of a trail for a new drug that may help alleviate the symptoms of PV as well and reducing blood counts. The trail is to be called'relief' but has not yet had consent from RD at the Nottingham City Hospita, I go back in a month to find out some more info and will but on this forum. hope this helps

  • I am only on aspirin at moment but interesting that many people who are on stronger meds still get these symptoms.

    Just wondered whether these meds make much difference to symptoms or do they just help to manage blood levels ?

  • Hi yes I agree, up and down days. Having a week of tiredness, but I find it hard to get to sleep sometimes.... still newly diagnosed(ish) with ET. Awaiting final results from bmb... I also worry like everyone does about what if / what next. Sharing here definitely helps. Good luck with the CT.

  • Hi I have ET am on HU aspirin blood pressure tab and warfarin and definately have up and down days. More up than down but it can hit at anytime. Today was great then lunch time, headache, tired and feel smashed. I find it a real roller coaster, some days feeling perfect other days crook as a dog. I now accept this is how it goes and have very supportive family, friends and partner. Fortunately I have been off work since 9 September to recover and return 22 April 13 but wonder if and how I will cope returning to 4ohr week, shift work, fitness instructing. It is also an emotional roller coaster and you are allowed to feel bad, sad, sorry etc. Allow yourself to feel these emotions so they can be released and pass. This site has been so helpful. Thank you to you all and all the best with the scan.

  • thank you again guys, best wishes to you all.

  • That's so reassuring to read... I've only been diagnosed since Nov 12, so quite new to this - ET, on asprin and interferon (and iron).. but the combination of fatigue, mood swings and that damm itchiness is quite wearing... good days are great and I try remember that feeling when it's a bad one... luckily I've a sympathetic employer so have kept working full time which I think helps the routine... some days I go in late or sleep in the afternoon at work... but I'm more motivated than if I'm at home on the sofa :)

  • Up and down days, definitely but at the moment going through an extremely bad phase.  I am even falling asleep holding my fork in my hand.  One of these days I am going to end up head first in my soup!  Seriously, I am dreading going back to see consultant as I definitely feel much worse somi am wondering, anxiously, what my bloods are doing.  

  • Hi, yes lots of up and down days with my PV. Went for venesection and temp was 38.3 so nurse refused to take off blood but eventually agreed to taking off 300 ml only. They weren't sure if it was a virus which hubby and grandson had or progression of PV. Scary times but got lymph glands spleen checked and ok.  Since had a shoulder op yesterday (number 4) so feeling a bit back to square one again as nothing feels right after anaesthetic.  Throat sore and a bit of a cough so not sure if virus maybe didn't clear up properly. Temp up and down but it is usually variable after an op.  At least I am signed off work and lazing about. There is always something positive!!

    Before the venesection I felt off, my arms and legs like lead and had about a week of feeling better before my op.  I think if your not feeing right you should push to go back and see the consultant and see if your blood counts are playing up.  All the very best, thinking about you, get on the phone after the Easter hols and get an appointment.xx Aime 😺

  • Seeing the lovely lady specialist on the 4th Aimee so keeping fingers crossed.  I am so used to going and lying on the bed by 6 that the dogs even nag to go up the same time every night.  Yes, they are both spoilt rotten and sleep on their own blanket at the bottom of the bed.

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