Hi everyone
I was diagnosed with polycythemia rubra vera 10 years ago and I’ve been on hydroxycarbamide since my diagnosis. I have managed with my condition more or less but for the past year or so I find myself feeling more and more tired. I am fine most days but then there are times when I do feel extremely tired and dizzy. It comes on me suddenly. If at home it’s fine as I can just seat down or lie down for a bit until my energy levels come back up. But I find it very difficult at work as I am a teacher and can’t just leave my classes. I have mentioned it to the medical team that follows me but they keep on telling me it has nothing to do with PRV as I have a treatment and my blood levels are okay. As they know I teach, they just put it down to stress but fatigue strikes me at work but also over the holidays. I am confused because I have read that fatigue is common with people affected by PRV. Anyone else on this forum experiencing fatigue? Thanks
Hello @sandrine - I am a fellow Myeloproliferative neoplasms (MPN) patient for me it’s Essential thrombocythemia (ET) diagnosed over 18 years and been on treatment all that time most of it Hydroxy. Sorry to hear how you are struggling especially work wise with the fatigue I do appreciate how that is. Do you have a clinical nurse specialist assigned at your hospital? So often they are good assistance with the practical day to day things we contend with. All you describe re fatigue is very typical Myeloproliferative neoplasms (MPN) things - even when the condition is safe and well controlled on blood counts the bone marrow is still working overtime unseen to us and hits the fatigue button usually just as you said sudden from nowhere isn’t it! The well known Myeloproliferative neoplasms (MPN)10 lists fatigue as the most common of symptoms for good reason. Do touch base with Myeloproliferative neoplasms (MPN) Voice the charity for our conditions lots of good info there and videos of bits to learn you would find helpful. You probably do it anyway but good hydration at work helps I imagine a busy classroom doesn’t leave much time for you but a bottle of water small sips all the time makes huge difference and hopefully you can chat to HR at work how it is for you at the moment - I do appreciate however how difficult it is in work situations with the fatigue and weakness.
Let us know how you get on
Hi @sandrine welcome to our forum.
Always a difficult one when you are told your symptoms are nothing to do with your main condition.
I am not a medical person, but in a similar situation, and as your symptoms have only come on in the last year, and your medication has not changed perhaps a visit to your GP might help in case there is another reason for it.
I attach the Blood Cancer UK details of fatigue
Blood cancer and fatigue | Blood Cancer UK
We are such complex unique beings
I realise @Jilly20 has suggested sips of water might help.
Perhaps check this out with your GP and consider if your students are allowed to sip water during classes, just thoughts. I have recently been told to drink less water because of kidney and bladder issues.
Please do let us know how you get on and I look forward to hearing more about you.
Look after yourself
Hi Jilly20
Thanks for getting back to me. It is reassuring in a way to find someone witht the same kind of experience regarding fatigue. I must say that my last visit to the hospital let me a bit confused and I felt I knew more about my condition than the registrar who saw me. Many things did not add up. I have tried to contact the nurse who follows me but they are all overstreched and I don’t know when she will have time to get back to me. GP is not much better and last time I was told I should check with the hospital as I am an outpatient.
I’m aware that dehydration makes things worse and I try to drink as much as possible during the day. But then there’s the issue of needing to go to the loo more often!! I have decided to start a diary to record when fatigue occurs to see if there might be something which triggers it, although just now it looks very random but it might highlight something in the long term. Thanks for helping.
Hi @sandrine I reckon a fatigue diary is a great idea.
Just to let you know since my diagnosis 20 yrs ago I do not deal with what personally stresses me well and it brings on my fatigue. Also my fatigue can come on with medical, emotional, phycological, physical and practical issues.
It can come on immediately or up to 24 hrs later.
I hope this helps in some way.
I will be very interested in your findings.
Hello there @sandrine, welcome to the forum! I’m really glad you found it here after living with Polycythaemia vera (PV) for so long. Sounds like you’ve done well not to experience the dreaded fatigue until more recently. What was your trick?!
Although I’m not a doctor, fatigue is definitely a well-known and common side effect of Myeloproliferative neoplasms (MPN), unfortunately, as this Blood Cancer UK research shows: Polycythaemia vera (PV) symptoms | Blood Cancer UK
After I was diagnosed with Polycythaemia vera (PV) last year I also started taking hydroxyurea and developed pretty severe fatigue. I hate it! I was so active before. Thankfully it faded over a few months, and I’ve got back to my hiking. I read some research that showed over 80 % of cancer survivors experience fatigue so that helped me feel less alone with it, as has this amazing forum.
I’m really sorry that your specialists downplay your fatigue. I don’t imagine it feels very comforting to have specialists that seem to know less than you! That really resonates with me as my first haematologist also minimised and got some basic facts wrong about the fatigue and other symptoms I experienced—hence why I changed doctors.
That same research showed that getting bright daylight into your eyes early in the day can boost energy (by helping to stabilise our circadian rhythms and improve sleep). Doing slow exercise like yoga, tai chi and Pilates can also increase energy, rather counterintuitively.
But these aren’t going to help when the fatigue kicks in suddenly, at work for example. In those situations I tend to rest and then resume the activity later (learnt this trick from a lovely forum member). I’m wondering how adaptable your teaching role is; can you sit more, is there a way to be less in front of your classes, can you build in breaks after each class? It’s worth bearing in mind that you are entitled to adaptations at work as you live with a chronic form of cancer, maybe worth checking that out?
Keeping notes like you mentioned is a great idea. You’ll be able to look back and see patterns emerge, and be able to show your specialists too. Through patterns in my own symptoms I was able to make the decision to change doctor as he kept insinuating I was making a fuss over just how bone-deep my fatigue was.
Something that might be of interest is contacting PALS if you feel you might want to seek a different doctor and need advice.
We’re here for you @sandrine, like these lovely responses from @Erica and @Jilly20 show. Do please keep us posted about how you get on.
Hi Duncan
Thanks for getting back to me. Maybe I did not explain myself correctly in my first post. I’ve been feeling more tired since I was diagnosed. I have had to adapt by doing less or taking it easier. If I go for a longish walk, I know that I’ll feel very tired in the evening or the next day. But what is new is the fact that I now feel exhausted some days even if I have not done anything tiring on that day or the day before. These episodes are becoming more frequent. Maybe because I am also older and my body finds it more difficult to cope with it all. I have reduced my working hours and only do 4 days a week now as I feel I need longer to recuperate from my working days. It’s not as easy to organise breaks during the school day. I often have one class leaving and just a couple of minutes before the next one arrives and I have to get tidied up and organised for the new class very quickly. I tend to do a lot more teaching seating down these days. Not ideal for the kids but I’ve got to do what’s best for me. Not sure about changing consultant. There are 5 or 6 in the ward plus the registrars and I don’t always see the same person. It’s pot luck. But thanks for all the suggestions.
Hi Erica
Very interesting about stress bringing on fatigue. Now that I think about it, it could be a trigger. I can think of what at least one incident when it would have been a big factor as my body had been under stress for a few days. I’ll definetely bear that in mind next time it happens.
Hello again @sandrine, lovely to hear more of how you’re living with Polycythaemia vera (PV). You were very clear, describing that fatigue so well that it reminded me of my own! I am sorry it’s feeling worse for you recently. Maybe it could simply be due to ageing—definitely something I’m experiencing myself, of late!
Yep stress can increase fatigue, like @Erica says, and can prolong its duration I’ve found. It can come on randomly for me too. Sometimes it emanates from lower back pain, don’t know if you feel it there too. My haematologist said it might be the Myeloproliferative neoplasms (MPN) doing its proliferating thing from its pelvic bone source of blood cell production. Apparently, with these Myeloproliferative neoplasms (MPN) our bodies can also start to produce blood in our spleens and, rarely, even our sternums!
I totally understand the complications of sustaining your energy whilst teaching, fatigue must be a mad juggle every school day. Definitely do what’s best for your self—after all, how can you teach if you’re too exhausted to be present? Glad to read that you’ve already cut down your hours. I know of another forum member who teaches with Polycythaemia vera (PV) and has described changing his work routine to better match his energy levels, maybe have a look around the forum for his posts.
As for changing consultant, I ummed and ahed about being referred to a different haematologist. Both of mine work in the same department but have very different treatment styles and my new one is more recently trained and thus up-to-date on current science.
For me, not having to double-guess whether my doctor even knows which patient they’re seeing, let alone what medicine they’ve prescribed, gives me more energy for my own day-to-day stuff. I don’t have to spend much energy worrying whether my doctor checks my blood tests each month to watch out for abnormalities and so on. It feels containing to have a caring doctor who shares current haematological tips (for example, mine taught me how to moisturise properly since hydroxyurea dries my skin out). Maybe you could have that sort of care too.
Let us know how it goes with improving your energy levels @sandrine.
Likely of interest. My dad kindly took photographic notes at the MPNVoice patients’ forum in Cardiff today!
Small world, I was at the forum in Cardiff yesterday. It was very interesting and helpful.
Hello @sandrine,
Welcome to our forum.
I am so very sorry to hear about your diagnosis and issues with fatigue.
It’s a shame that you have not been able to contact your clinical nurse specialist as they may be able to help further/ provide continuity of care and can be kept up to date with how you are feeling, so that can provide support to you as best they can. Would you possibly see her next time you are in clinic? Or have another way of contacting her?
Feeling fatigued is a common side effect of all blood cancers and can be frustrating as well as sometimes be hard to balance exercise and movement with taking enough time to rest. Keeping a diary sounds like a good idea as it can help identify triggers or help with a routine. The page Erica recommended on Blood cancer and fatigue | Blood Cancer UK may be useful as it includes information about what causes fatigue, tips on how to help with this and stories from other people. It also includes a link on that page to ‘your rights at work and things you could ask for to help you’, which could be beneficial if you feel like any reasonable adjustments can be made at your work place to help with fatigue.
In addition to this, we have a page on your employment rights Blood cancer and your employment rights | Blood Cancer UK and a factsheet for your employer which is available for delivery, free download, to print or to send to someone and can be found here If your employee or colleague has blood cancer | Blood Cancer UK Shop
Please keep us updated and if you would like further support or to chat things through you can contact us 0808 2080 888
Best wishes,
Emma (Support Services Nurse)
Ha small world indeed! Glad you found it helpful @Jonpd, would have loved to attend too. My dad said he spoke with Professor Knapper and quizzed him about Myeloproliferative neoplasms (MPN) and gleaned all sorts, and now understands how profound fatigue can be.
@Duncan Professor Knapper is my consultant.
Oh funny! Lucky you, my dad said he was very approachable. He even divulged his personal reason for being interested in treating Myeloproliferative neoplasms (MPN) which seem very humanising. I’m glad you’ve got a goodie @Jonpd, hope you’re doing well 
Hi Erika
Thanks for sending the link. I had a lookmat the doc and found it very interesting. I see they do suggest making a diary so I’ll definitely have a go at it. The keeping active suggestion to fight fatigue was also interesting. I was away to Germany over the October holiday and walked every day mostly on the flat as I do easily get out of breath nowadays. I did manage 2-3 hrs each day and although I was tired in the evening, I felt good about it. Not sure if there’s anything such as good fatigue but that’s how it felt. Tired and relaxed at the same time. Not the totally drained feeling I get at times. After 5 days, my body had had enough but I was surprised that I managed that much especially as I had a very bad episode of fatigue a couple of weeks before. So being more active could be a solution but it’s not that easy with a busy work life and winter being upon us. But I’ll bear this in mind.
Thanks Duncan
I think I can tick the vast majority of all the bullet points in the how can fatigue affect you section!!! That’s why it’s so frustrating that I seem to hit a bricked wall when I do mention fatigue to my medical team!!!
Hi Emma
I only see my consultant once a year. I do sometimes have a phone appointment in between face to face appointments at the hospital. It never used to be an issue as I could email the nurse who follows me but lately the service has gone down. It now takes weeks for her to get back to me and I have to email several times to get some answers. I have given up chasing up on my last email. I know the NHS is under a lot of pressure but it’s adding to the stress and anxiety. I’m glad I’ve found this forum as I am getting lots of answers and good tips.
HI @sandrine sorry to hear that you are still having a problem getting a response from your nurse.
Perhaps you might consider contacting your hospitals PALS (Patient Advice and Liaison Service) to say if they can assist.
Perhaps it is OK to say that not getting a response is adding to your stress and anxiety which is not good for your condition.
Please do keep us updated and really look after yourself.
Hello @sandrine,
So sorry to hear that you are having trouble contacting your team, that doesn’t sound right.
As Erica kindly mentioned, perhaps contacting PALS may help as they can provide advice on which steps to take. Alternatively, you could also call the hospital switchboard and ask to speak with the medical secretary for haematology and see if they can contact a member of your team that way to perhaps arrange a telephone appt or face to face review to update them on how you are feeling and that you are having trouble getting a response via email.
I’m glad you are finding the forum helpful!
Take care,
Emma (Support Services Nurse)