The many facets of fatigue

[Manouche]

« Many definitions of fatigue have been proposed. One that is often cited refers to fatigue as “an overwhelming, debilitating, and sustained sense of exhaustion that decreases one’s ability to carry out daily activities, including the ability to work effectively and to function at one’s usual level in family or social roles” (1). There are at least two dimensions in fatigue, “I cannot do it, I am exhausted” versus “I do not feel like doing it, it is not worth it”. The first dimension is relatively easy to characterize as it is usually associated with obvious physical signs. The second dimension is more difficult to characterize and is usually referred to as central fatigue or “the failure to initiate and/or sustain attentional tasks and physical activities requiring self motivation” (2). Central fatigue rarely occurs alone, it is often associated with sleep disorders, pain, and affective and cognitive alterations. »

ncbi.nlm.nih.gov/pmc/articl...

[Otterfield]

Interesting, thank you. The second dimension sounds as if it's related to feelings of depression. I had clinical depression back in the late 1990s and felt that kind of fatigue, lethargy and a complete lack of motivation.

The physical dimension, in my experience, is different but related, because when I want to be active but can't, negativity and then lethargy can set in, with a sense of "what's the point?"

I am coping (mostly) with MF fatigue (so far) by accepting it and embracing rest when I need it. I have most energy and positivity in the mornings, going for a short walk or tackling a bit of housework and feeling close to normal. Afternoons are generally about reading and evenings are spent lying on my bed, listening to the radio or reading some more.

Trips out for blood tests and transfusions are exhausting, even though they don't involve much exertion. I suppose that is psychological fatigue.

[katiewalsh]

I would propose a 3rd definition: If I force myself I can do these things but it will be very hard and difficult on my body. That’s the most common in my world. Does anyone else get that type of fatigue?

[soisew in reply to katiewalsh]

yes every afternoon. If I don't get it done before noon, I can't get it done or even started that day.

[katiewalsh in reply to soisew]

That’s almost identical to my problem. But if I take a nap in the afternoon it helps. Of course the nap just lets me be awake without feeling physically lousy. It doesn’t provide enough energy to do anything significant. I’m early stage MF & on Hydroxyurea. Do you mind sharing what you are? Katie

[runnerbird71 in reply to katiewalsh]

I feel the same. Myelofibrosis and on jakafi for 4 weeks.

[MistyBlue2]

Interesting to read, Manouche.

I was dx with PV 8 years ago, and considered myself lucky not to have suffered with fatigue at all... until recent weeks. I began Pegasys 12 weeks ago, but when the dose was raised to 90mcg, it has hit me like a brick wall.

I find it to be a debilitating, exhausted, physical ‘ache’ that seems to come from deep inside my chest.

But when it stops me functioning, I have to really talk myself out of getting down - otherwise I think the mental fatigue would be a very real thing 🙁

[Otterfield in reply to MistyBlue2]

I was on Pegasys for just over a year, when my diagnosis was still ET. I was on 90mcg a week and it did a great job of reducing my WBC count, but I was much more fatigued than I had been on Hydroxycarbamide + Anagrelide. Of course, this may partly have been due to the start of my transition to MF, but not necessarily, as the new fatigue was marked and developed quite quickly.

[MPNBlog in reply to MistyBlue2]

Hello Misty Blue, I have also had very bad fatigue. I wasn't sure if it was the PV or the Pegasys which I've been on for almost exactly 1 year. I have recently had to stop the Pegasys for 2 months and my energy levels are so much better. So I now realise that the Pegasys is certainly a major contributor, though I'm only on 45 ug every 2 weeks, but it has controlled my counts. I am about to restart the Peg. The challenge is to know if I am I getting an allele burden benefit from the Peg to make it all worthwhile. If so I would put up with it. If not I'm not so sure now that I can do so much more because of less fatigue. It can be debilitating as you say, and gets you down. I'm going to ask for another allele burden test as I haven't had one since diagnosis in 2017. Do you need to increase your dose? At 90ug I was literally falling asleep at the dinner table... All the best.

[MistyBlue2 in reply to MPNBlog]

Hi MPNBlogIn my mind, there’s no doubt the the Pegasys is behind my fatigue. I’ve been really anaemia for a few years now, and never felt fatigued with it - until I began Peg.

However - after 4 months on it, my WBC counts are finally heading in the right direction (down from 29 to 19) so that’s good news.

I’m also finding the fatigue is hitting me less as the weeks go by, so worth sticking at it!

After starting at 45mcg for several weeks, I’ve done about 6 months @ 90. I wouldn’t feel good about upping the dose further 😫

[MistyBlue2 in reply to MistyBlue2]

(Sorry! - should read 6 weeks at 90mcg 🙄)