Hi. I've been reading with interest the recent question about fatigue. My question is whether any of you had just mild fatigue in the beginning? My specialist says my fatigue isn't related to my ET because it doesn't completely knock me out but instead just makes me feel exhausted. I can still function but it's difficult, but after sleeping I feel rested. I'm wondering if it's progressive and starts out like this in the beginning. I'd really appreciate any help your feedback. Thanks very much, Katie.

19 Replies

  • Hi Katie

    What a strange thing for your specialist to say. Fatigue IS one of the main symptoms of ET. The link is proven. If you didn't have ET, you wouldn't have the fatigue. How intense it is varies for me and generally depends on what I'm doing. For me, the more stress I'm under the more tired I get. It also depends on medication. When I wasn't taking anything, I was tired all the time, Hydroxy knocks me out and interferon is better, but I find the side effects unmanageable some days. I hope this helps. Maybe you should give your haematologist the address of this forum so they can inform themselves lol.

    Best wishes


  • The fatigue for me makes no sense, it follows no pattern. Some days it can be quite debilitating and other days I feel fine. I never seem to be refreshed in the mornings though - no matter how well I sleep and I sleep like a log!

    Mary x

  • Hello Katie and Mary and all who experience fatigue. It is certainly part and parcel of our disorders. Mine varies and has done since diagnosis. I suspect lack of exercise contributes.

  • Hi JSKLy :) About exercise --I join you fully !!! For me it is : The harder I work physically-- the less tired I feel-- and the more energy I get.

    The first 10 minutes is pure hell--soooo much acid in the muscles, but then I start feeling gorgeous !! I have to say-- that building up a good condition on MSD meds is a hard job in itself-- often it feels that you have to start from the beginning every day, but do not give up, cause gradually you will progress.

    To avoid straining joints, dont walk too much : bicycling is good and garden work -- and yoga and riding (careful), but NOT workout and spinning and bodybuilding !!!!!!!!

  • Hi Katie,

    I have started to feel more tired in time. Some days I'd happily do nothing at all, but with the busy lifestyle I have, it's not really an option. Being on interferon made the fatigue much worse.

    I do quite a lot of exercise, which helps. I just have to make myself to do them, walking and exercise classes work well for me. Once I'm there it feels better and afterwards I feel much, much better.

    I hope you start feeling better. It's not nice being tired all the time.

    Take care


  • Hi katiewalsh ! Mine also "grew" slowly . In the beginning I just felt depressed. I convinced myself that depression did not belong in my life and graduately I realised that it was no depression but mere exhaustion.

    It's getting worse and worse (but it is not directly unpleasant)-- I can fall asleep everywhere (except for nights) . ;) I started to take heme-iron and after some time it worked wonders. I stop taking it 3 days before the injection (Pegasys 45 ml) and wait until 4 days after until starting on again. I have an idea that it would work against the interferon.

    Many doctors are against--yes, even ban iron, but it has made my life quite bearable, so I let them talk. Exhaustion is dangerous --It build up acid in your body, gives you headaches, makes you sleepless at nights and turns you into a generally unpleasant person (laughing)

    My blood platelets balance around 500 ( after a good 3,5 years medication) --the iron has only increased the number with max 50, so it has not harmed my progress.

    I don't go against doctors' advice generally--- but if I have to live I want to be alive and not a snoring bunch of misery ;)

  • Sometimes the fatigue feels like trying to walk through treacle

  • If there are no bears in sight--it's not treacle ;) I know how you feel--sorry for joking !! I use to go outdoors. The more oxygen, the less tired you will feel. It's a pest, but it's there-- like the bad neighbours !!!

    Something :: It's fooling you mostly. It is not fully real. It's your brain centres which are in need of oxygen. It is important to breathe deep and well. Sugar works sometimes for me--but definitely not always !! Electro chemistry is tricky-- but it won't defeat us !!!!!

  • Hello Katie

    You have posed a very interesting question. About two years before I was diagnosed with PV I was having a blood pressure check with my GP who asked how I was generally and I said I was getting unusually tired and was finding that the 4 mile walk I did every morning was becoming slower and slower. We laughed and decided it was likely to be age related (I would have been 63 then).

    Two years further on the tiredness was meaning that I just could not live life at the pace I had been - I was then diagnosed with PV. For the next year or so I put tiredness down to venesections on a regular basis of once a month. The tiredness began to really impact on my life as I spent many hours in bed until it was suggested that I go to the Guy's Hospital to see Prof Harrison as things were causing a concern to my haemetologist. It was discovered that I had mutated to MF and was placed on Ruxalitinib. Within months my tiredness had improved beyond belief, still there but a fraction of what it had been.

    Now nearly three years down the line I am in great condition (I think) but the tiredness/fatigue has not gone away. Sometimes it is a little so that to cook a meal seems a marathon and then other times it is so bad that the only thing to do is bed rest until it passes. It means that we think twice about going to the theatre in London and a meal out - we might just go to a matinee so I can be home in bed by 7.30! Unheard of a few years ago.

    We are all different I know but I believe that tiredness/fatigue is the one common factor for all of us. I constantly read that exercise is a good way to combat fatigue but unfortunately, in my case, I can't walk far at all before the aches get too much. Just one of those things. I was diagnosed in 2012. Get your haem to read our replies!

    Best wishes,


  • Hi Katie,

    I can only speak for myself but I started experiencing a feeling of fatigue when I was in my early 60s. I managed to do a full time job but always felt worn out on the inside as the fatigue got worse.

    Quite honestly I felt as if I had lost my mojo. I put it down to my hectic working lifestyle - late nights, early mornings, high annual mileage and lots of stress - catching up with me.

    Going to the GP two or three times a year was a waste of time. He kept telling me it could be post-viral fatigue. After a few years of complaining he started telling me it was depression which to everyone who knew me was complete nonsense. I just stopped going.

    It was only by chance that an unscheduled operation revealed a platelet count of just under 1000 when I was 66 and just three months before a retirement trip around the world with my wife.

    My useless GPs then told me to find my own haematologist and it was only by chance I came across a Specialist from Heartlands Hospital in Birmingham who diagnosed ET, started me on Hydroxy and all within 24 hours. Last year it had transformed into MF.

    Yes the fatigue comes on slowly at first and then becomes a fact of life.

    Like a lot of people on this forum I have good days and bad days, although there has been a perceptible improvement since starting Ruxolitnib.

    Hope this helps.

  • Unable to change my surgery, it's the only one in the village. Fortunately the Dr who couldn't be bothered to look into my fatigue retired soon after. When he was younger he was a very good and diligent person who probably saved my life following a knee operation. He was very suspicious of a chest pain I had and brought in a specialist to the house (unheard of in those days) who immediately had me whisked off to hospital to treat a pulmonary embolism.

    The surgery has one or two great Drs who I see when needed but like most GPS they have limited knowledge of MPNs and rely on the haematology oncologists who are excellent on the whole.

  • Hope you've changed your GP Norman....unbelievable!

    Mary x

  • You guys are amazingly wonderful. Thank you all for taking the time to write such detailed, thorough responses to my question. I compare my fatigue to being similar to an old commercial in the U.S. for Energizer batteries. I'm the toy bunny without Energizer batteries, I feel like I've run out of steam/battery juice. You're a huge help. I'm very fortunate to have you and this forum in my life and that my fatigue isn't severe like it is for many of you. Thanks again!!! Katie

  • Great analogy, bunnies and batteries!!!

  • hi katie,

    i agree that a GP is not the person to rely on for information about a rare condition they know nothing about. i suspect i have had PV (initially diagnosed with ET) for at least five years, diagnosed just 18 months ago. and Yes, fatigue is the one common denominator for most of us. i am 75 retired, and once energetic, now not so much, i can plan an event for one day and then rest the next. my life is very quiet at this point, but after doing some research, i am on super turmeric, ginger, policosanol, l-arginine with l-citrulline, vitamin c and vits e. i am extremely hypersensitive to the usual drugs the hema wants me to take. so do your own research and listen to your body. no one is omnipotent, not even dr's or specialist. good luck and maybe you should find another GP, i did.

  • Had ET 15 months....recently suffering with FATIGUE.......made me feel so very sad.

    wud this fade away in time , also had a couple of NOSE BLEEDS?

    cud persons suffering from fatigue let me know how they pace themseves, please

    Wud love some insight...

    Regards to all u lovely people....

  • Hi Katie,

    Yes, I have had the experience where initially it was not a problem. I am 3 years into ET and the fatigue is quite unrelenting. I wake up exhausted, sometimes my legs feel like cement, even though I sleep soundly.

    Once I get going, it is manageable, but I now give myself more time in the mornings.

    I had a fellow patient tell me her Mpn specialist was treating fatigue with Concerta which is an ADHD drug here in the US, I am going to explore that option when I see the specialist.

    Take care.

  • Thank you for your response. I’m fortunate as mines not that severe. Is your specialist really good? Is there anything they can do to lessen it? I sure hope you get some relief. Katie

  • Thanks for your reply. I plan to see an mpn specialist at a large cancer treatment center. I will update once I have been seen, but it won't be for several months.

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