Hello, I’ve just joined. I was diagnosed with polycythemia Vera 2 years ago. My main symptoms are extreme fatigue and terrible itching after showers etc. I’m on weekly interferon injections and venesections when needed. But it’s the tiredness that’s crippling.
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Hi Jill12, welcome, though none of us really want to be here. I’m just over a year into officially having Polycythaemia vera (PV) and like you itching and fatigue we’re the most debilitating symptoms. I’m on a different regime to you and we are all different. so here’s my experience re tiredness. Originally I tried to ‘fight it’ and stay awake, with hindsight this was a mistake for me and made it worse. From reading around on this forum I realised the best thing for me was to accept it and go with the flow so to speak and try to manage it.
i know when I’m more likely to be tired ( for me it’s between 4.00 - 6.00) and try not to arrange to much to do just in case. On average I probably sleep during the day three or four times a week. I still feel tired but can always find the energy to do things managing it like this. It helps that family and friends know so don’t get upset if I suddenly disappear or say I can’t make it or that I’m going to be late. I’m retired though, how you manage this if you are younger and have to work or have children to look after I don’t know. My admiration for those doing that has no limits.
Best wishes and take care
Pedro
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Hello there @Jill12, a great big welcome to the forum to you. I’m so sorry to read you were diagnosed with Polycythaemia vera (PV), and of that fatigue and itchiness, but you’ve found just the right place.
I can empathise with how difficult the tiredness is as I was diagnosed with Polycythaemia vera (PV) a couple of years ago too, and fatigue was by far my worst symptom once the hydroxyurea had kicked in. Fortunately I had no symptoms prior to diagnosis. My haematologist at the time was rubbish and tried to insinuate that I was imagining the fatigue or unfit, but it’s actually so common for cancer survivors that it has its own acronym of CRF (cancer-related fatigue)—something like 80 % of us will experience fatigue from our cancers and/or their treatments, and our doctors should help us with this.
You’re not alone with that fatigue as dear @Pedro shows (¡Hola, Pedro!). The itchiness is also so common that Blood Cancer UK has some information about ways to minimise it that you might find helpful: Itching | Blood Cancer UK
Just in case you haven’t seen it, here’s the great BCUK information about Polycythaemia vera (PV): Polycythaemia vera (PV) | Blood Cancer UK
As for fatigue, I read some meta-analysis cancer research soon after my diagnosis and it showed, somewhat counterintuitively, that doing slow exercise like yoga, tai chi and Pilates can actually boost our energy levels when fatigued. I do a couple of sessions per week of yoga in front of the telly which keeps me bendy-ish.
Simply keeping active in ways we enjoy is beneficial to our energy levels, like walking our dogs, swimming, basically any kind of movement. I walk and hike and find that helpful, not that I’m climbing mountains! Just walking around your local area is really good for you, although in nature is always best I’d say.
But like @Pedro says, having siestas really helps! I’ve never been one for catnaps but I do now take a break and rest if fatigue is interfering with whatever I was doing. I think of it as resting and resuming as I try to get back to what I was doing before I rested.
Another thing I read that really helps, and perhaps might be taken for granted, is getting daylight into our eyes early in the day. That helps stabilise our circadian rhythms and improves sleep. And speaking of sleep, prioritising my sleep routine has cured my lifelong insomnia!
Anyway, that’s probably more than enough to be getting on with! Maybe have a look around the forum as many Myeloproliferative neoplasms (MPN) survivors have shared tips about itchy skin. Hope that helps a little @Jill12, glad you found us!
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Hi Pedro
Thank you so much for your reply. It’s good to be able to talk to others who understand. I still work part time (circumstances) and I find I need a whole day to sleep when I’m finished my 4 days. I manage as best I can and keep smiling it’s good therapy!
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Thank you so much. I was lucky my specialist is great, always cheerful and positive and listens to how I feel. I find my three boys (men now) don’t want to acknowledge I have it, fear I suppose! I’m very happy I found this forum as it really helps
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Oh I love that about your specialist @Jill12, it’s not always the case that we have attentive doctors. My second one is great so I feel fortunate to be heard now, but there are some who don’t even think of Myeloproliferative neoplasms (MPN) as blood cancers and thus minimise their potential severity for those of us actually living with them!
Perhaps something I’ve read other Myeloproliferative neoplasms (MPN) survivors say around the forum might resonate—because our blood disorder symptoms and treatment side effects can remain somewhat hidden, like the fatigue, these Myeloproliferative neoplasms (MPN) are often described as “invisible” cancers. Unless we tell others, they likely don’t know we have chronic illness.
Personally I feel like my fatigue must be obvious, but I think for others it’s often a surprise to know we’re walking about with these diagnoses that don’t always show.
Maybe your sons find it easier to believe their mum is fine and that helps them not to worry? I’ve heard people say oh yours must not be as serious as “proper cancer” and initially I had such survivors guilt.
But we are living with a chronic incurable form of cancer and so I’m getting used to standing up for, I guess, my right to be as fatigued as I feel! Thankfully my other half and loved ones have seen just how debilitating it can be and understand Polycythaemia vera (PV) better now. I hope your sons come to have more of an idea of how tough it can be for you too @Jill12.
Would it help to share with loved ones information about Polycythaemia vera (PV), maybe that BCUK information? I’ve shared it with family and it helped my dad at least get his head around this rare blood disorder I’m stuck with! He even went and got tested for the JAK2 gene mutation (thankfully negative).
Anyway, I look forward to hearing more of how you get on @Jill12. Do please keep using the forum as there’s a lovely group of Myeloproliferative neoplasms (MPN) survivors here who make it feel far less lonely!
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