What does the fatigue feel like?

[Fjdjdjdjd]

Hello All

I have been overcome with the most extreme fatigue all of a sudden.

I was at work interviewing and could feel my body almost collapsing under me as I sat and my whole body feels like I'm on the edge of sleep as I'm moving around. The poor candidate must have felt like they were doing a very bad job poor girl!

It feels like you do after you have been travelling and haven't slept in 36+ hours. Is this what fatigue can feel like?

I had covid for the first time before xmas and I'm not sure if this is a bit if a resurgence or long covid or if this is the MPN

[Cat1001954]

when I get fatigue it literally wipes me out no energy and no motivation only wanting to sleep. Wishu feel better

[Mazcd Partner MPNVoice]

hello, so sorry that you have experienced fatigue, it is horrible. As to how it feels, it is beyond feeling tired, it can affect your whole body, and can feel like you are trying to walk through treacle, or as if you have lead weights attached to your limbs. It is definitely a side effect of MPNs, and is experienced by many people in varying degrees of severity and can last for anything from a few hours to almost constant for some people.

It may sound counter-intuitive but when you are feeling fatigue, exercise can really help, you don't need to go to the gym and doing anything really strenuous, just going for a walk can really help, or dance around your living room, and many people find that yoga helps them.

We have some helpful information on our website, including a 'fighting fatigue' information leaflet, so have a look mpnvoice.org.uk/living-with...

I hope that you don't have too many episodes of fatigue. Best wishes, Maz

[LittleLuna in reply to Mazcd]

love how you have explained fatigue feeling Maz. Exactly it. Sometimes so hard to put into words.

[Emmyroos]

When I had Covid, I experienced greater and more intense waves of fatigue for weeks after Covid than I normally do with just the MPN. That lasted a few weeks even after I was over Covid, btw. I mean really flattening fatigue.

Also I have to agree with the exercise/going for a walk part. With general MPN related fatigue, I have to fight myself to get up and move, go for a walk and but it almost always helps me through that wave.

I would say if this is post-covid fatigue though, just give yourself more time to rest as opposed to exercise.

[Ovingite]

Hi, I fully agree with Max's description of the fatigue effect of MPNs, but given the time of year (with low light levels) it might be worth getting a simple vitamin D test. I had this problem several years ago and found I was vitamin D deficient. My GP prescribed high dose vit D tablets and the fatigue reduced massively and very quickly. Good luck in finding a solution

John

[Wyebird]

I think fatigue hits people in different ways. I’m convinced you have experienced it. I also get short of breath prior to it hitting.

I get so bad that if a fire broke out in the house I’d just look at it.

Also I can’t concentrate can’t add up simple HTU. or even talk. I’ve gone to A and E a few times. A full blood count usually shows my platelets have gone up.

I would recommend going to fatigue clinic if it’s a major problem. They helped me no end. Even though I was very sceptical.

Good luck

[IrishSarah in reply to Wyebird]

Would absolutely second that recommendation re:fatigue clinic

I was in a similar boat to you Fjdjdjdjd really struggling with fatigue and no idea if it was MPN or post covid. Long story short I ended up doing a fatigue management course with a long covid clinic and find it surprisingly helpful. I can try find some of the materials for you and send them on if you’d like? Just pop me a dm x

[Fjdjdjdjd in reply to IrishSarah]

that’s so kind of you. My consunlant (who I don’t rate) thinks it’s post covid. But I’m seeing a propper MPN specialist in a few weeks so I’m going to see what they say

[Zingawinga]

A very good description, have suddenly had trouble keeping eyes open, and moving limbs like wading through water

[EPguy]

Emmyroos has it right from my experience. I and husband both had/have long covid from infection 3 years ago. He had fatigue badly for well overa year, (after near death) and powering thru it is not effective. But the MPN flavor of fatigue can do well with getting active, I've found exactly that.

You're unlikely to experience long covid to this extent, we had the original Wuhan strain pre vax (and test) era.

[Zeppelin11]

I FEEL YOU! Some days I'm so tired and its hard to keep myself motivated. I'm a pretty upbeat person so I have to remind myself that it's just something that will come up. I have started to take a beet juice drink to pep me up as well!

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