Fatigue and heamotologists

It is quite shocking to read the number of examples of heamos dismissing the serious fatigue we all seem to be suffering with statements like "your bloods are fine its not your MPN or medication". Could What else can we do? it be the case or does the anxiety and stress exacerbate the fatigue. People have suggested finding another heamotologists but where and not all heamos are experts in our related diseases. Someone suggested giving nurses the name of MPN Voice website - they may learn something. I suppose if heamos don't fully understand our situation then how can they help? I read somewhere that prolonged stress can affect the platelets. Not everyone with MPN has a history of stress but many have and certainly do at present. It would be interesting to hear what the Dr.at Guy's has to say about it. I agree it's time to start making noises but to whom?

5 Replies

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  • Fatigue as you have said is part of what MPN patients may well experience. Maybe because it is so general doctors accept it as part of the wallpaper but not life or death factor.

    I find that getting some sort of exercise helps me. And if I can do without sugar.

    When I was on a drug trial "level of fatigue" was a regular question. So it is recognised as a patient concern.

    Cheri

  • Hi

    Fatigue is my biggest issue and I always tell my heamotoligist and he always says it is not connected because my platelets are stable around 300. I am going to my next appointment armed with leaflets and MPN info to try and educate him. I need him to support me in this, as I'm am off work and need the support of my Drs to confirm to work that fatigue is connected to my ET. So il join you in making noises.

  • I agree with you, looking back, stress I think does has a significant factor in my opinion as I was under enormous stress when I had my first stroke! Now I cannot deal with stress well at all, I think because of what it did to me at that time!

    My haemo was quick to jump on my gp's suggestion that I may have chronic fatigue and I was checked with blood tests, to no avail, but from being on here, it looks more like it is part and parcel of the condition and not any other factors.

    Having put on weight in recent years due to lack of exercise and bad diet - I've started a low carb high fat diet, which includes cutting out sugar and it has helped with the weight loss, but not the fatigue levels unfortunately.

  • Glad that you have raised this. Fatigue my main problem too. My GP gently raised the idea that I might be depressed when I mentioned the serious day to day fatigue. I realise that mind and body are interwoven so completely with this sort of thing, but I am certain that ET is the primary cause in my case and I can't reasonably be expected to be a barrel of laughs when I wake up most mornings feeling like I have been run over by a train!

    It is important for us all to feel supported by the medical people we see, and it is distressing to see that so many of us have struggled to be believed, or taken seriously, and have had to shoulder the burden of trying to educate the "educated" people in white coats! I am sorry that you and the others that have commented have suffered like this. Kind thoughts, P

  • I read about some people with extreme fatigue being prescribed a stimulant eg. Ritalin. And what's wrong with that if it enables them to have a life ? I think it was on the American site.

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