MPNs and Fatigue

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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Hi does anyone have symptoms with essential Thromboissis I am so so tired all the time

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Hi @Pat, we’re sorry to hear that you are feeling tired all the time. We have information on symptoms of ET on our webpage which may may find useful here: Essential thrombocythaemia (ET) symptoms and diagnosis | Blood Cancer UK.

Although from the information it doesn’t appear as its a symptom you would be experiencing it doesn’t mean that people with ET don’t experience tiredness as part of their condition as everyone’s body’s are different.

@Pat, have you spoke to your treatment team about what you are going through? We would recommend contacting your CNS if you have one just to give them the big picture and also to give you personalised advice with your medical records and treatment history in mind.

You may find information on our website on fatigue helpful in managing the tiredness you’re experiencing Blood cancer and fatigue | Blood Cancer UK.

If we can be of any further support, our Support Services Team are always here: Blood cancer information and support by phone and email | Blood Cancer UK.

Kind Regards
Bav

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Hi @Pat and welcome to the forum. It’s a great place to share and a place where we can all support each other. Bav has given good advice and I’m sure there are others who will be able to share their experiences with you. Have you got a good medical team around you?

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Hi @Pat a great big welcome to our forum, I am glad you have found us.
I have another blood cancer but I certainly know about living with fatigue it can be really debilitating.
@Bav.BloodCancerUK has given you great information and support sources and I hope others can help you more.
Perhaps it is worth talking to your medical team about how you are feelings and any other symptoms you might be having.
Please keep posting I look forward to hearing more about you.

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Hi @Pat I also have ET and have fatigue, a lot of us do, over time you find a way to manage it that suits you. You don’t state what your treatment regime is, are you taking meds? I was diagnosed 11 years ago and am currently on HU to control platelets. Listen to your body, learn your limits, have you accessed the
MPN Voice website, specialists in the main MPNs - ET/Polycythaemia vera (PV) and MF. Lots of info there and they have a buddy system if you need it as well,

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Hi @Janet. It’s so good that you can share your experiences - I think it really helps. What ways have you found to manage your fatigue? It’s been a crazy few months hasn’t it. Have you been keeping ok?

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Hi pat. I can relate to you. The worst symptom for me is fatigue. The way I deal with it is doing little and often. Rest when you feel you need to. I am nearly 47 ad on hydroxycarbamide. I was diagnosed in 2005 so had ET for 16yrs now. I know my limits and rest when I need to. Some days I feel more exhausted than others. Keeping a balance with healthy diet, regular exercise and plenty of sleep will help. Good luck .

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Hi @Emmaco, I agree with every word of your post. My trouble is I feel a bit more energised and go and overdo it, then plunge back down into my fatigue and it takes a long while to clamber back out of it again, I never learn !!!

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Yes I’m exactly the same Erica! Some days I feel I’ve got loads of energy and overdo it then it hits me and I’m shattered for a day or so. It’s so easily done.

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I can relate to so much of this thread and it helps to know I’m not alone. Forgive what follows, but I feel it might help to get it out.

I’m 50 and was diagnosed with Myelofibrosis 2 years ago and take Peg-interferon. I work in healthcare which requires a great deal of concentration, assimilation and retention of information and exposes me to some unpleasant and distressing situations from time to time. On days when I’m particularly fatigued, the brain fog that comes with it can make it very challenging to function and it’s a bit like wading through treacle, sometimes I can’t even find the words to speak or even say the wrong words! That can be embarrassing when you’re talking to the Chief Medical Officer/ Chief Executive! The effort I have to put in to trying to function adequately leaves me even more exhausted, I find. I reduced my hours to 4 days/ week a year ago and whilst that helped a little, more often than not, I’ve worked on my day off over the last 9 months due to staff shortages. The staff shortages have obviously meant additional pressure for me and my team and over the last couple of months and so I now feel utterly exhausted. We are now back up to a full compliment of staff, which is something, though there’s a huge training burden that comes with that until our new colleagues are up to speed. A 2 week holiday in October helped but by the end of the second day back, I felt as exhausted as I did before. I’ve also not been sleeping well and whilst sleep doesn’t necessarily ease the fatigue, I find it helps me to at least manage it. Over the last 9 months, all I’ve done is work, eat, go to bed by 8 or 9pm at the latest, rinse and repeat. I have no energy for socialising or exercise, etc.

I’ve spoken to the consultant about this and I don’t think it’s solely the Interferon that’s the main cause of it, I think it’s a cumulative thing with pressures of work and the underlying diagnosis; as the Interferon is working, I’m reluctant to change it. I would sell my soul to the devil to rest, sleep and get back on my feet a little and have a GP call to discuss coming up. I can cope with the tough days usually, it just rather feels like they’re all like that at the moment. On top of all this is an overwhelming guilt at feeling so exhausted (I know everyone is tired given the last couple of years) as it puts my team under more pressure and it feels pathetic that my only symptom is fatigue and there are folks out there going through so much worse than that. I suppose it’s all relative though, eh?

Anyway, if you got this far, thanks for reading. Onwards and, hopefully, upwards.

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