Headaches/joint pains worsening?

Morning friends, dont know if you all get these headaches ,more so with MPNs ? like most of us the tiredness and fatigue also ! but even the GP when looking up side effects of HU fatigue is not listed .. Its sure is a mystery condition i realise! I know its been spoken on here that familes and friends dont really understand that the mpns are a form of cancer, one because we keep our hair on treatmen ( albeit thinning ) and we take it in tablet form ... my husband tells people i have Luekemia because this is what they have heard off with blood ,however i tell him i dont have this , but think he feels its easier to explain, my chidren dont seem to take my condition or way i feel unwell most days , i get there people with worst ( well i appreciate this and agree ) but its also because most of the time we look well eh ! i also get very down and teary when i dont feel like socialising i just look forward to bedtime on my own sadly rant over .. all the best Holly

19 Replies

  • Holly,I sympathise totally.For me too as time has gone on,more joint pain and headaches.....not wanting to be out and about in case I feel the brain fog etc.We are coming to U K,leaving France Saturday morning,a 6hour drive to the port,then the 5hr ferry....I am a dithering wreck!!Hope to get to London M P N day....and I have two shows in Nov also......will I cope ? This time I am more worried than ever before,the disease I am sure can really get us down,would be so nice to gossip face to face with a fellow sufferer.....it's a lonely maladie Holly.Hope you cheer up soon,e hugs and best wishes Sally.

  • Bless you Sally and thank you ,yes was hoping i could get to London MPN meet i live in Kent so would be okay, we have alot family celebrations on next month mainly my husband side of family , i even dread them ...But im sure once your with friends etc yoir be happier and hopefully feel as best you can , yes would be nice to speak face to face ... you never know eh ,, and Pam , Helen etc i feel we all know and trust each other unlike alot of people who meet via internet ,so many dodgy people in this world sadly , hope you have more good than not so good days Sally 💐🙏x

  • Thankyou too Holly,it helps morale so much to chat with friends on here,don't know how I would manage without it,enjoy family next month! Sallyxxx

  • 👍xx

  • Hello Holly,

    Sorry to hear that you're suffering at the moment.

    I was thinking of going to the London forum too - but we have family coming for a week. I'm demented!! I don't mind anyone staying for a couple of nights - but a week? Maybe we could make a concerted effort next year Holly?

    Hope things improve for you.

    Mary x

  • Hi Mary , yes good idea . Next meet up in London . Ooh i know what you mean, re family staying im the same , I find it hard word and tireing when anyone stays ! take care Holly x

  • Hi

    First, in the U.S. MPN's are categorized as a type of Leukemia so your husband is accurate. Second, I think Mary and others should go to London to meet. A week is too long for a family visit and you all would enjoy yourselves. Just explain the trip is for your cancer. At least consider it, you'll learn important information and it'll be good for you physically as emotional connections are extremely good for our health


  • Hi katie thank you for reply , i suppose people all over have heard of Leukemia mir so i havent spoken to anyone who knows what mpn is not even Nurses ! all the best Holly

  • Hi Holly

    I haven't been able to post or read anything on here for a few months and I've missed it so much as I don't feel so alone or worried about my Mpn when I see how others are feeling, coping with all this.

    Well this morning I managed to get on here and read your post, and nearly cried, I have been feeling so bad with headaches and bone/body pains recently, they are getting worse, and I have been wondering if it's all part of mpns or age (I'm 52, feel like 102).

    But just seeing your post has made me feel not so alone 🙂

    Just yesterday someone said how well I look and I could have burst into tears, I felt so ill, so tired like my body is covered in cement, and these horrid headaches!! I look forward to going to bed just so I don't have to move.

    I am sorry that you don't feel good at the moment, I wouldn't wish these feelings on anyone, but I have to say that seeing what you wrote has made me feel that I'm not alone.

    I wish you well Holly and hope you feel better in yourself very soon.

    Best wishes


  • Hi Jacqai, aww poor you , yes i understand it certaintly does help to share things and it mskes us realise we are not making it all up and also i guess it proves how strong we really are inside to carry on regardless best we can and like Helen said when we need to rest etc we do ! I woukd say at most i will have 2 or 3 days out if the week where i feel at least 80 % well , the 20% when my bunion hurts hehe 😁 so feel free to message me anyway time if your worried im 65 by the way and dont work , so for people on here that do work .. well i think there great ! best wishes hooe you feel bit better asap Holly x

  • Thank you Holly x

    I should have broadband connected soon, so will be easier for me read and post on here again.

    So very comforting to know there's somewhere to turn to when you have that niggling worry, or want helpful advice or just assurance that your not alone on planet mpn!

    Anyway hope your feeling better today.

    Best wishes

    Jacqui x

  • Dear Holly

    I hope you are feeling a bit better today it’s horrible when we have these down days .

    I know others are worse off but if you’re feeling bad you’re feeling bad and if you have to rest then do so and don’t let others make you feel guilty for doing so .

    I’m always here for you .

    As for looking well and carrying on that’s called bravery xx

  • Bless you Helen for your kind thoughts , more importantly how are you keeping , having all this treatment and hospital visits , im always here for you also , Xx🙏

  • Ah Holly, some days are really the pits and still we look so well. My toes curl as I smile saying thank you for some well meaning compliment. After all it would be plain rude to snap back 'don't care how you see me, I feel jolly awful'. The headaches are miserable and as for the fatigue. I love to fall into bed at 7.30 and stretch out on cool sheets.

    Fortunately, during the autumn and winter I am at my best as it is the heat that floors me. The tiredness is something I always mention when I go to clinic and the answer is always the same 'it's to be expected'. So there we are, locked in a fraternity and at least, understanding.

    I do wish you well x Liinda

    PS I am going to try and make the London forum

  • Hi Linds, my heam dismisses my fatigue ,can i ask what dosage of HU you take . glad your making the London forum X

  • Hi Holly,

    Actually, I take Rux because I have MF, 15mg in the morning and 10mg at night. I missed taking HU as I mutated to MF from PV after two years. How can your heam dismiss tiredness. It's so obvious. I makes me so grrrrr.

    I am sorry it has taken me two days to reply but did not open my lap-top yesterday. I have now registered for London, my husband will be with me and he is Max so see you there? xx

  • Sending you all enormous E hugs in the hope you all feel better soon. Think of something really special, a really good time that you will never forget and I know that doesn't dismiss the symptoms but you will feel better. I think of special times with my kids or grandchildren and that helps.

    Thinking of you all, kindest regards Aime xxxxxxxxxxxxx😺😺

  • Bless you Aime, yes your right when im with my grandaughter it takes my mind off myself a bit , your right take care , all the best Hollyx

  • I had my annual haem specialist visit yesterday and have been put on an HU holiday for a month to see if my horrendous muscle/joint pain and weakness subside. If they do then they are going to consider changing my meds, if it doesn't then I'm being checked by a physiotherapist for fibromyalgia tender points. If this isn't the case then they'll check to make sure it hasn't progressed to PV/MF. They have never performed a bone marrow biopsy so I'll guess that's what they'll do.

    In saying that i did have extreme fatigue prior to starting any medication, headaches, migraines and dizzy spells as well, and still do. We have to be kind and understanding of ourselves and do whatever we can to ease our burden but unfortunately this usually means changing our whole lifestyle and adapting to our limitations. This can be depressing and exhausting in itself and finding different "hobbies" that our bodies can cope with can be very daunting but can open our minds to a simpler life and appreciation of the smaller things that really do matter.

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