Fatigue

[cwayman11]

Hi...everywhere I read it talks about the fatigue and many people here also seem to suffer. Everytime I've mentioned it to my haematologist he says 'no reason'...which concerns me given he diagnosed me with PRV. Wondering if I should change my consultant. Any London recommendations? Thanks

[Paul42]

Hi,

Considering 85% or so people with an MPN suffer fatigue at some point, then he is wrong.

Sadly some members of the medical proffesion correlate blood counts with symptoms which is untrue.

I believe it is important our consultants at least have a basic understanding of the associated issues caused by the condition.

Prof Claire Harrison is London based at guys and Thomas.

Paul

[cwayman11 in reply to Paul42]

Thanks Paul

[Aime]

Hi, i would definitely follow Pauls advice re changing your consultant. My one was the same to begin with: your blood counts are ok so you're ok attitude. Although my fatigue is more severe just prior to venesection, I am exhausted after a days work, go to bed by 8 pm and don't have a social life going out at night. That's the choice I've made I know because I still want to work for both financial and personal reasons. How any consultant can call that a normal life (as mine tried to do) I don't know.

Sorry for the rant, please follow Pauls advice. From what others have said, Prof Harrison is great. Kindest regards Aime xx😺😺

[Inca]

Mine does say the fatigue is P V and Hydrea ,both cause it,he also tells me rest when necessary,exercise gently....not always possible is it ?

[James1731]

Hi,

Fatigue has been the biggest issue for me.

I can cope with everything else but trying to live a normal life when you wake up at 12pm,take a nap during the day and ready for bed at 8 it's hard to do anything when it's bad.

Luckly I have found the last 2 Venusections have really helped me get on top of how I have been feeling.

The fatigue is still there but I'm awake first thing and haven't had a afternoon nap since my last Venusection (last Friday)...Not long to wait until yours Aime

I have tried a number of things to help with the fatigue when it's bad but nothing really works but for me I will be pushing for more regular venusections to help me hold on to my job and hopefully get back to a normal kind of life.

[jillydabrat]

Reading stories like yours makes me so angry. I think everyone should carry a list of all the known symptoms of having an MPN and the fact that it was diagnosed as a cancer by the WHO in 2011 so when you inevitably come across a medical professional who says "I dunno" or "That's not associated with your MPN" they should whip out their information sheet and ask them to familiarise themselves with the condition and its symptoms. The info on the MacMillan Cancer site is a perfect example.

[Skyehope in reply to jillydabrat]

I think I'm going to put you in touch with my haematologist! He doesn't believe it's a cancer and says none of my symptoms are related to my MPN (because of the levels they are at). I'm a bit worried about the medical report he's going to give my insurance company because he has such a relaxed attitude about MPN's. He says I probably shouldn't worry about it for another 20 years when I'll be 60. Was quite dismissive in fact but I live in the north of Scotland and doubt I'll find an MPN specialist up here...... Gosh, I've just ranted too, sorry!

[jillydabrat in reply to Skyehope]

Please, firstly go on the MacMillan Cancer website and print off all the info on your type of MPN. It's on the cancer site so it's a cancer. tell him/her that the World Health Authority recognises it as a cancer so why doesn't he and then PLEASE look for another consultant. Maz may be able to point you in the right direction. If you are worried about your consultant then you won't have faith or confidence in him/ her. Also look up the side effects on HydroxyCarbomide and it will show fatigue and joint pain. Go armed and prepared and with the attitude that you will not be fobbed off. Good luck x

[Aime in reply to Skyehope]

Hi Skyehope, I live in the north east of Scotland and attend Aberdeen Royal infirmary haematology clinic, where do you go? Kindest regards Aime xx😺😺

[Skyehope in reply to Aime]

Hi Aime, I go to Raigmore Hospital in Inverness. I'm not sure if there is an MPN expert there or even how to find out! Aberdeen must be good is it? That's where my blood was sent to check for the Jak2 mutation xx

[Aime in reply to Skyehope]

Hi Skyehope, I live in Elgin, not far away? I find ARI not too bad, they certainly got going with tests at the beginning but were a bit big headed when I asked about second opinions, that they knew as much as any other haems in the country but they don't specialise in MPNs.

I'm sitting on the fence with them at the moment but if I get to the stage I'm not happy with them, I will be looking for a second opinion. Maz did give me the names of good haematologists at Edinburgh Royal Infirmary but I have put the names in a safe place but hopefully Maz will oblige again.xx

Kindest regards Aime xx😺😺

[Skyehope in reply to Aime]

Ah yes, I always liked a wee trip to Elgin when I lived in Inverness! I live on Skye now though, so it's a bit of a trek to Inverness, especially with a 3 year old in tow. Gosh, I'd have thought somewhere as big as Aberdeen would surely specialise in MPN's.

The more I learn about these diseases, the more I wonder about how much certain consultants know about them (I don't like to be unkind - I know they have a lot of diseases etc to be knowledgeable about and can't know everything about them all) but we each need to know that we are getting the best care, treatment and support possible.

I have those safe places too - the ones I can never remember quite where they are...... xx

[Mallard]

Hi just last week I had my hospital appointment and when I mentioned I still suffered from fatigue from time to time and it got me down at times, the response was............. "well its definitely not your MPN or the 1000 mg of hydroxycarbamide you take very day 7 days a week, in fact of all our MPN patients you are the only one who has any of these symptoms", in fact some patients are on 3 or 4 hydroxy a day and they don't complain, they went on to suggest I visit my GP to investigate my symptoms further and even suggested maybe I was depressed and needed to take anti-depressants." Thank goodness I am strong minded and not easily influenced, they can take a running jump. This is a large teaching hospital and this kind of attitude is really alarming. What I don't understand is - all the information/research out there on MPNs and the MPN voice website - re hospitals not kept up to date with all the current information?

[cwayman11 in reply to Mallard]

That's terrible. Thank goodness for this forum! Stay strong.

[Aime]

Maz, I know leaflets cost money and are there more for the patients. Do haematologists have a sort of professional site or somewhere they find new treatments and updates? I just wondered if there was anyway we could at least reach all the haematologists in the UK to begin with to make the ones who are unaware of the nature of MPNs more patient friendly? It's probably a daft (and maybe impossible) idea but quite a few of us seem to be coping with a bit of ignorance from our haems which is quite scary and doesn't fill me with confidence.

If there is anything that could be done that would be great, otherwise I think there will be a queue forming at Prof Harrison's door.

Kindest regards Aime xx😺😺

[rjw1 in reply to Aime]

hi aime,

This lack of understanding is widespread...how long do we all intend to sit back and take this professional apathy...

regards

Richard

[Essexdoll]

My haemotologist also seems to think my fatigue isn't down to my MPN and it is what has brought me here, looking for an answer, he thought I may have chronic fatigue syndrome was tested, but heard nothing, every time I see him he tells me to go back to my GP but it's impossible to get an appointment with her!! At least now I know, it is part of the disorder and I shall tell him so at my next appointment!

[cwayman11 in reply to Essexdoll]

I told mine about MPN Voice and gave head nurse details so they can get better information to help their patients.

[Cassie11]

I get tired too but haematologist says not related but read otherwise somewhere else. Have been told to mention it to soecialist nurse when I see her.