MPNs and Fatigue

Hello @CosmicHobo. Thank you so much for sharing your story and you really don’t have to apologise. It is so helpful and interesting to share our stories. I really feel for you. I was diagnosed with myelofibrosis at the age of 35. At the time I was continuing to work full time after having some time off around the time of diagnosis because I had a nasty infection that I couldn’t seem to fight off. Fatigue was (and still is) a big issue. Like you, I was really struggling and felt I had no life at all apart from going to work, resting as best I could and returning to work the next day. In the end I kept picking up infections and the fatigue became too much. Fortunately I had a very sympathetic GP who was willing to sign me off as long term sick and I had to retire early. Although traumatic at first it was the best thing I could do because it took the pressure off me trying to keep working. I took on some voluntary work and other activities when I felt well enough because I made up my mind I wasn’t going to just sit at home doing nothing. I appreciate every case is different and I was fortunate to have an excellent GP to support me. Sending warm wishes. Willow X

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I would see that comment as Positive, Erica, and feel quite ‘Chuffed’. The fact that you have the strength of mind, to look well, fit, or good, helps one, cope I think.

Horses for courses, of course, but it works for me, Keep up the front!. All the best, Ron

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Thanks for taking time to respond, Willow. Sorry to hear of your circumstances, good to see you managed to do some voluntary work to keep you occupied. I hope things aren’t quite at that stage for me yet, I think the lack of unbroken sleep is making it all seem much more difficult to manage and hope if I can rest up and get back on my feet, I’ll be back to managing the fatigue as I was before. Yesterday, I felt I had a little more energy and today I feel utterly wiped out and like I’ve been run over by a truck. The unpredictability of it is so frustrating. Still, hoping to speak to my GP tomorrow and we’ll see where we get to. Have an ultrasound at the hospital tomorrow too, what are the bets the GP calls at the same time?! :person_shrugging:

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Hi @CosmicHobo @Willow @Vindicatrix gosh, can I relate to the (for me) work/sleep/ run a house none of which roles to anywhere need the standard I would like.
I worked from my diagnosis at 53yrs till 58yrs old full time. Luckily I had accrued quite a lot of leave otherwise I could not have done it. It was no life at all, but finances were needed.
I was extremely lucky that I slept well but I wonder if your GP might be able to help with your sleeping. @CosmicHobo
However, I do agree with you that sleeping does not alleviate fatigue, but I think it is good to feel more rested and not staring at the ceiling all night fighting to get to sleep. For me rested helps my body and mind functioning better.
After 18yrs I manage my fatigue better as well, I know myself better and better each day.
I realise my fatigue comes on after I overdo it emotionally, physically and practically.
It can come on immediately, it is all too much, to up to 24 hrs later.
Look after yourselves

Thanks @Erica, the sense of under performing, whether true or not, is perhaps one of the most difficult things to cope with when one has a high personal standard of work. I find that very difficult to accept.

Hope to speak to my GP later about help with sleep, etc., and I hope to be better at managing the fatigue over time. As you described earlier in the thread, I do have a tendency to take full advantage of the days where I feel less tired and it then wipes me out for a day or two afterwards. I think I need to learn moderation!

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Hi @CosmicHobo If you learn moderation perhaps you might teach me !!!
We are all work in progress.
Look after yourself

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Good afternoon
I’m new to this but need some advise, I was diagnosed in January with Polycythaemia vera (PV) and am struggling with Fatigue & feeling as though my blood is boiling inside, are these normal symptoms?
Should I be worried

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Hi @Mandyb, a very warm welcome to this community, and thank you for posting. I’m so sorry to hear you’ve been experiencing the symptoms you’ve described here. It sounds as though this must be so uncomfortable for you. We do have a support line and if you’d like to talk things through with our Support Team, please don’t hesitate to call us on 0808 2080 888.

May I ask, Mandy, whether you’ve been able to share your symptoms with your haematology team yet? We’d strongly encourage you to do so, if you haven’t already, so that they’re able to best support you through this, help you understand your symptoms, and give you the right advice for your individual circumstances.

We do have a booklet on MPNs, including Polycythaemia vera (PV), which you can view or order here- Myeloproliferative neoplasms (MPN) booklet | Blood Cancer UK Shop. We have online information too, here- What is polycythaemia vera (PV) | Blood Cancer UK.

I’m sure others will also share their own experiences of Polycythaemia vera (PV), and please don’t hesitate to reach out to us if you need any support.

Best wishes,
Tanya.

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Thank you, Tanya for your response.
I will take your advise and contact my haematology team.

Best regards
Mandy

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