Thank you Lee, I hear what you are saying, I am trying to implement the changes you mention, I think part of me does not want to, but that is a familiar theme for many of us!
Regards Gary
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Hi @Chris1 I copy one of my posts above:
My fatigue comes and goes because I believe it comes on with what personally stresses me (I do not deal with stress well since my diagnosis) and overdoing it emotionally, medically, physically or practically.
Sometimes it comes on instantaneously and everything is just all too much, sometimes it comes on up to 48 hrs later.
Sometimes I need to rest or have a sleep other times fresh air and appropriate exercise actually helps me.
I have more energy earlier and flag in the evenings.
I have got to know myself and how I function over the last 19yrs since diagnosis, but everyone is different.
I think my answer is to look at yourself and get to know yourself and then you can look at the patterns and what and when leads to your fatigue coming on.
Have a look at the Blood Cancer UK link above.
To me it is just managing it in a way that personally works for you.
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Hello @Chris1
I am sorry to read you are struggling so much with fatigue, it can be caused by many factors and so knowing what is the best way to help, can be tricky to work out.
There is fatigue caused by the disease, fatigue caused by the medication and also emotional or psychological fatigue can play a part. Other reversible causes or contributing factors could be anaemia, thyroid dysfunction, depression, or diet.
A referral to a physiotherapist that specialises in fatigue, may be an option for you. You could ask you or CNS if they can refer you for advice and support, if your Trust has this service.
There is also an app for your phone called Untire - I have no personal experience of this, but have been told by others it is helpful, you might want to look into this.
Next time you see your Haematologist do ask him if he thinks there may be any reversible causes to treat, and/or if a short course of steroids may be an option to help with your energy levels.
Do call our support line if you feel that talking some of this through would be helpful.
Take care, Heidi.
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Thank you @Heidi_BloodCancerUK for all your suggestions and advice. My haematologist has already done specific blood tests to check that I am not anaemic etc, and I am not depressed , nor suffering any emotional or psychological factors. I have a good support system in place too. I do regular exercise and eat a healthy diet. The only thing that I probably do need to address is what I try to do in a day, and keep control of the situation when I am with other people. Yesterday, for example, I met up with an old friend who was visiting on a day coach trip. (I live in a holiday resort) She wanted to have a good look round the shops in the village where I met her off the coach. It meant that we were on our feet for 1 and a half hours. It was too much for me and I really suffered for it come the afternoon. I thought we would be going into the cafe for a sit down and a chat, but she had other ideas, and I didnāt want to spoil her day out, so I went along with it. I will be more assertive in future, and not get caught out like that again. Surprisingly she seemed to have no concept of cancer fatigue or any concern for my welfare, considering her own husband died of it two years ago. A lesson learned.
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Hello HLowery - I am an Essential thrombocythemia (ET) patient like you and yes fatigue is very much part of the disease itself - and yes it is odd isnāt it how it can ebb and flow - itās been explained to me that there is a lot going on in our bone marrow all the time with the proliferation that causes us to have high platelets - so even when our counts are under control and our treatment therefore successful, it doesnāt alter the condition itself which keeps ploughing away over producing - and when that is particularly in overdrive it can give that unique fatigue of Essential thrombocythemia (ET) that overwhelms and can at times come out of nowhere - the thing of course is that we donāt see whatās going on in the complex systems of our bone marrow so it can seem to make no sense that it can be really bad at times and a little easier at other times - but internally thereās a lot happening that we only know about when the shut down creeps in! You will find your way around it as time goes along but keep us posted how you are doing.
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Hi @Erica . Like you I am better in the morning, and then flag as the day goes on. I do try to do my exercise and any chores in the morning. I try to pace myself, but it doesnāt always work. Refer to my post to Heidi as an example. As you have been diagnosed for an awful lot longer than me, I suppose you have learned to adjust by experience. It is still all a bit new to me. It is 9 months now, since I was diagnosed. I think I do try to fit too much into a day sometimes, so I need to be stricter with myself. Also, I remember reading in one of your old posts, that you made changes with your friendships in the early days. Dropping some and making new ones. I think I need to do the same, as some friends adversely affect my wellbeing. Again, reference to my post to Heidi. Thanks for your reply. Best wishes to you. From Chris.
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All very true @Jilly20 . We canāt see what is going on in our bone marrow, but our body is aware of it, and reacts accordingly.
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Hello Chris1 - I am like you with Essential thrombocythemia (ET) diagnosed about 17 years now - like you I used to have bouts of fatigue before then that once diagnosed and I got to understand the disease in hindsight it all added up as no doubt the condition had been there for some time already. And yes as has been mentioned to you by your consultant fatigue is part of Essential thrombocythemia (ET) itself - itās good you have been checked for other bits and ruled that out - and without a doubt all you describe is very much how Essential thrombocythemia (ET) fatigue goes (unfortunately 
) - as mentioned above to Lowery we have a lot going on that causes this - I can see itās early days for you since being diagnosed in October and you will find you get to know what you can manage ok and what takes things outside that box - and family and friends will too - if I could change one thing from my early years from diagnosis and treatment starting it would be to speak up and say more to friends and family and employers as to the impact the condition was having - as yes as you found with your friend trying to keep up while doing normal and nice things can be very difficult or impossible even - and I think itās a kindness to ourselves to speak up and say I canāt do that just now or I need a rest for a bit or I can go to this but will only be able to do x, y and z - helps you and also the others around you of what can and canāt be done. Keep us posted how you get along.
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@Chris1 I have found that my good friends understand if I say ācan we go for coffee in the morningā or say that I am āa lady that lunchesā.
I am rather partial to a nap in the afternoons.
My walks and Pilates are in the morning.
During Covid times I re-assessed my life again and thought am I really enjoying this activity or commitment and if I actually was not enjoying it I discontinued doing it and or tendered my resignation and I really felt liberated by that.
After all these years I have learnt to say āNOā
However if a good friend came for the day that I had not seen for a while I would realise that it was going to fatigue me, but that I was choosing to see them and I would rest the next day.
Resentments eat away at me otherwise. I am a great reframer of the ways I look at things and just the word āchoosingā makes a great difference to me.
Itās taken me years to even get to this stage, be kind to yourself
Has anyone else got any handy tips?
.
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Thanks @Jilly20 . Trouble with me is that I always think of others first, and I have to learn to put myself and my needs first. I guess this will come in time, and yesterday certainly has taught me a lesson, that some people are quite selfish even when they know my situation. Fortunately I have a quiet week ahead, so will rest as much as possible. I know that the fatigue does tend to come in waves, and mine has been quite bad for some time now. I think it is related to the workload in the garden. We have a large garden that demands a lot of maintenance. We are now looking to make some changes that will ease the workload long term. It is good to hear from people like yourself who have been doing this journey for a lot longer than me, as it helps to understand what I need to do to manage it.
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Thanks @Erica . I was under the impression that we were going in the cafe for a catch up, as that was the meeting point, so I wasnāt prepared for her desire to shop non stop. It has taught me that in future I will make it quite clear what the arrangements are, as I never even got a drink, as she had already had one on the journey here. I was dehydrated by the time I got home, so that wasnāt good for me either. A new mindset for me will be to plan carefully what I can comfortably do and stick to it, even if others want to do otherwise. A definite learning curve for self preservation.
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Hi Iām a newbie 3weeks on HU after Essential thrombocythemia (ET) JAK2 pre myelofibrosis diagnosis. Found out that my platelets had been high for the last 5years but my GP put it down to inflammation -following complicated near fatal back surgery - I also had neck surgery 2 total knee replacements over the years. So now Iāve started this journey - feeling extreme tiredness my platelets were 893 coming down to 700ās in the last two weeks. Am on 500mg one a day. I m hating the tiredness as am like some of you still energetic - love gardening and walking.
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Hello @Jola13 and welcome. As you have probably been reading in the other posts, it is all about making adjustments to our life to help us manage the fatigue. Even then, we can sometimes get caught out. It does take time to make these adjustments, so every now and then, we have to reassess what we are doing and how, to try and get the most out of life without life taking too much out of us.
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Hi @Jola13 a great big welcome to our forum I am so glad that you have found us, you certainly have been through the mill and had some surgeries.
I am glad you have found this post and if you would like to talk to someone the Blood Cancer support line is there for you on 0808 2080 888.
I echo completely what @Chris1 says.
I am not a gardener, we live in a flat, but I am a walker, I think both hobbies are so good for clearing the mind. I also like listening to music as I walk.
I think what I will say to you is to pace yourself, really look after yourself and be very kind to yourself, this is an emotional, medical, physical and dealing with practicalities journey.
There is a lot of emotional highs and lows and a lot of waiting for things.
I look forward to hearing more about you.
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Well said Ericaā¦i am an almost identical situation to Chris ā¦and my Specialist has advised i get an Iron infusion that will help
All the best to you both.
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Hey there @Gary57, @Chris1 and others, Iāve been wondering about cancer-related fatigue (CRF) recently too as it kicked in for me since I started taking daily hydroxyurea 500 mg for polycythaemia vera, a similar Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET). I was fortunate to have no symptoms of Polycythaemia vera (PV) prior to diagnosis, so I know these symptoms of fatigue are due to the chemotherapy alone. You might find this meta-analysis of CRF interesting; basically, having regular exercise including yoga/tai chi/qigong, bright light therapy, and ginseng can help improve the symptoms CRF. Unsure how to use ginseng yet but daylight and a bit of daily exercise are doable, right?!
Cancer-Related Fatigue: Causes and Current Treatment Options Cancer-Related Fatigue: Causes and Current Treatment Options - PMC
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So wise as ever @Erica. It really is about learning to say no sometimes, isnāt it. I havenāt got any tips about fatigue yet, but I am finding it hard to explain it to people. Itās unlike tiredness for me, but thatās what others tend to think I mean by āfatigueā and itās so much more bone-deep, inside-out and wearying than being simply tired. Thinking of these words has tired me out though so Iām off to have a catnap!
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Hello @Duncan . All very interesting, but not strictly true. My fatigue is not related to hydroxycarbamide as I donāt take it. The fatigue is related to the cancer itself and will affect each person differently according to their triggers. In your case the trigger could be the hydroxycarbamide. You need to be very cautious of taking ginseng with little or no knowledge, as it interacts adversely with several medical drugs and conditions. The use of it for some people could prove to be very dangerous. Anyone considering it should know that it should not be taken for long periods, and should consult their doctor before using it.
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It is interesting, such a lot to learn and so much information to synthesise to make sense of how to live with all the adaptations these disorders necessitate. Like I said, I was completely asymptomatic prior to diagnosis and the symptoms I now experience started after chemotherapy as that is the only change in medicine/diet/exercise Iāve made. Iām pretty sure my body is reacting to the chemotherapy doing its job. That meta-analysis of current cancer-related fatigue research I shared goes into some detail about using ginseng, unsure if youāve had a chance to read it? At this early stage of treatment I donāt use ginseng, having only just read about its positive affect on cancer-related fatigue. I understand that contraindications can occur between different medicines and herbal remedies (such as SSRIs and St Johnās wort), but would be very interested in reading more about ginseng so that I can decide whether itās worth using or even safe to. Are you a medical professional, @Chris1? Where would you suggest I look for relevant research? I really hope your fatigue decreases as mine is currently my worst side effect of all this and itās incredibly frustrating!
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Essential thrombocythemia (ET) - prefibrotic myelofibrosis JAK2 - Chronic Myeloproliferative disease on 26th day HU 500mg per day and 75mg Aspirin plus my usual meds.aluprinol, sertraline, Lyrica, etc
Ive been having a week of bad Headaches - extreme tiredness - and the last couple of days extreme pain in my shoulders, hips and feet - not just joint pain but deep bone pain. Have been to to stop Diclofenac on my last bloods visit - can only take Cocodamol I have all strengths - lowest doesnāt work - and if I try the higher doses I am like a zombie. I have moment where in an instant I have to stop what Im doing and crawl into bed.
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