Fatigue - What is your experiance with Polycythemia?

I am a Polycythemia sufferer age 56 and have been for a few years now. I am pretty active playing competitive tennis 2-3 times a week, looking after 2 kids 9 and 11 ( with wife) and running my own business - desk based.
I find currently that most days that I am tired in a way that I have not had before or at least not in such a persisting way. It is like everything is a physical effort and after a weekend of childcare I can’t do much more than work for the next 48hr and want to go to bed at 8.
what sort of levels of tiredness do others feel / experience?

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Hi @Phildeww a great big welcome to our forum. I have CLL, diagnosed 17 yrs ago, at 53 yrs old and always been on ‘watch and wait’ or ‘active monitoring’ ever since.
I would say that on a day to day basis fatigue is the symptom that I live with and have learnt to manage.
When I was working full time I just worked, ran a home and slept. I had a lot of banked leave, holiday and flexi leave which I used when the fatigue really set in.
Since diagnosis I do not deal with what personally stresses me well, I get fatigue and it is just all to much. My fatigue sets in when I overdo it emotionally, practically or physically and it can set in immediately or hit me up to 48 hrs later.
Sometimes I need to duvet dive and other times appropriate exercise preferably in the fresh air helps me.
As you can tell my diagnosis ahs given me the opportunity to really look at myself and get to know myself. What do I want to do and who do I want to do it with.
I don’t do evening I use my energy up during the day.
In hindsight I wish I had explained to my family, friends and work more about how I was feeling.
Perhaps ask your medical team about your fatigue and impress upon them how it is affecting your life.
We are here to support each other and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Take care of yourself, have some treats and personally I think you are doing so much I was worn out reading your post.
Please keep posting and can anyone else relate to @Phildeww

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Hello @Phildeww. Welcome to this forum. I am glad you have found us and I hope you will find it helpful to share your experiences and to read about other’s experiences also. As you may know Polycythemia is classed as an MPN (myeloproliferative neoplasm) of which there are several. I have a different MPN - myelofibrosis which was diagnosed when I was in my thirties. Before diagnosis one of the first things I noticed was fatigue. I was working full time and often had to lie down and rest after work before I could do anything! As @Erica has said, I think fatigue is a common feature in most blood cancer patients and is a challenge to live with because it doesn’t ‘show.’ I was so upset recently when a friend said that I looked extremely well! If only she knew how I was really feeling! I also find that emotional stress adds to my fatigue and I have learnt to pace myself and sometimes say ‘no’ if I don’t feel I can do something. Hope this helps. Please keep posting and let us know how you are doing. Warm wishes. Willow

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Hi @Phildeww and @Willow.
Willow my pet hate is someone saying ‘Oh, you do look well’ when I am really struggling inside and feel terrible.
Anyone relate to us?

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Many thanks to you Erica and Willow for your comments. Much appreciated.
Being new to this forum I was wondering are there many specific Polycythemia sufferers registered or I was wondering how closely linked your conditions are to mine in terms of similarity on this tiredness issue?

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Hi @Phildeww, thank you for reaching out to the forum, you have come to right place. Many people with blood cancer experience fatigue at some point and the experience can be different for individuals as our everyone bodies are different. You may find information on our wellbeing site helpful in understanding more about fatigue and ways to manage it here: Blood cancer and fatigue | Blood Cancer UK.

If we can be of any further support, our Support Services Team are always here: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer.

Kind Regards
Bav

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Hi Phildeww, I was diagnosed in December 2020 with Polycythemia Vera aged 51 and fatigue is the symptom that disables me the most. I found out about having PV as I was suffering from very bad cramps and when I got cramp in my face I thought I was having a stroke. Blood tests done and next day doctor phoned me to tell me I had PV. As I was still suffering from the cramps I was prescribed medication that relaxes my muscles, coupled with fatigue its a wonder I can get out of bed. I find that if I do too much I will fall asleep as soon as I sit down so I do a bit, rest, do a bit etc. I am on sick leave at the minute as I work in a nursery and not only would I be at risk, so would the children. A nurse at the hospital told me about another source of advice for people like us with PV its called MPN Voice just Google it. Just like some forms of Blood Cancer, fatigue is an unseen disability so people assume you are ok. Hopefully you will find something that works for you and maybe explain to your nearest and dearest about your fatigue. Macmillan have booklets about coping with fatigue etc maybe you could explain by using them. I keep a diary of my fatigue levels which helps. Let me know how you get on and what works for you. Kind regards, Franc

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Hi @Franc69 a great big welcome to our forum and very wise words from you. You have already supported someone on this forum and that is what we are all about.
Your cramps and fatigue sound very debilitating and as you say fatigue is an unseen disability. My pet hate is people saying ‘oh, you do look well’ when I am fatigued, everything is just all too much.
Your doing a bit, rest, doing a bit, rest is such a good idea. I never learn and feel a bit better, over do it and wipe myself out and repeat the pattern.
The Blood Cancer UK booklets are also good.
I never managed to explain fatigue at work, unless you suffer from fatigue you cannot know how it feels. It is certainly not the same as feeling overtired which is a common misconception.
Sometimes I need to duvet dive and other times fresh air and appropriate exercise helps me.
Perhaps if your symptoms get worse it might be worth going back to your medical team.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Take care and I hope to hear more from you on fatigue, you speak so much sense, take care.
Has anyone else got any handy hints on fatigue?

@Phildeww

Hi

Im 39 and was diagnosed with PV last August. I’m currently not on any treatment/medication and just had venesections along with regular blood tests. As a teacher I’m currently on a heavily decreased timetable and can’t say I’m struggling with fatigue but I know it is a huge symptom. I guess it maybe a case of you body reacting more to be being sat and then exerting a lot and maybe switching between two extremes. Or maybe reaction to any medication your on. Maybe liase with ya medical team if your feeling it more than usual.

Hope you find answers

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I have ET and feel the same as yourself. I can relate to what your saying. The fatigue I feel is one of the worst symptoms of my illness. I think you just have to do things in moderation, give yourself time to rest and time for yourself otherwise you get burnt out.

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