Does any else suffer from extreme tiredness with fuzzy head suddenly hitting them and has to go to bed and sleep?

[netty64]

I have ET and would like to know if anyone else gets this.

[JP1952]

Yes, my husband says it's when I hit a brick wall. I am fairly fit and active but sometimes, and it can come on really suddenly I have to stop whatever I'm doing and lie down for a nap.

[Inca in reply to JP1952]

Yes ,me too P V nearly 12 yrs ......still hit the wall most days.Its so different from ordinary tiredness, the brain & body just stop. Difficult for other people to comprehend. Really should pace the day ,but I have never learned to do that .So keep hitting the brick wall !!!'Best to you .

[JenngeetingR828 in reply to JP1952]

Same!!

[Rem31]

Oh yes, frequently! It was the main symptom that eventually led to my ET diagnosis in 2013.

[ChattyPanda in reply to Rem31]

Me too

[Eadaoin]

Yes - and despite having been diagnosed with ET over 20 years I still get caught out. Every bit of energy seems to run out of my toes. I just have to stop what I am doing and sit down, sometimes doze! Have never got used to it.

[Ovingite]

Hi Netty64Take a look at my reply to Gunner on tiredness with ET

John

[SuET2017]

Yes

[Doggy1903]

yes energy levels sometimes struggle eg planning to put a new bar of soap in the bathroom can be a major event!! You will know the feeling😀!

[Gordonek]

Yes... Not too often now but sometimes I have to just stop whatever I'm doing and go for a sleep... Usually for about an hour

[Nettie22]

Hi , I also have this problem usually if I've over done it cleaning or gardening . It's OK to rest and get some sleep . It sometimes takes me a couple of days to feel half way normal again .keep your water intake up this can help .Love nettie

[Peter18]

Yes, I've had this on and off for the last three years. When drowsiness arrives in waves and I can't keep my eyes open, I change activity but don't usually sleep. I still find the "fuzzy head" you describe a bit disconcerting - a sort of fog, or fugginess, or loss of full mental sharpness. Oddly enough, during Lent last year I cut out all cakes, biscuits and sugar, along with dairy products and drank water copiously for the duration- and actually felt much better. Very best wishes.

[netty64 in reply to Peter18]

Thankyou

[Eadaoin in reply to Peter18]

That would be a real penance for me !! Could manage the water drinking bit 😂 What are you doing this Lent?

[nightshadow in reply to Peter18]

I am aiming to cut out added sugar this lent. It will be interesting to see how if it affects the fatigue. I'm not sure I could do it forever though. I am well addicted.

[Lin8n]

Yes, i have ET. Tiredness is not everyday, some days I even wake up exhausted. I try to pace myself now instead of rushing to finish things. It's the Foggy head I hate.

[Wyebird]

Yes not so much the fuzziness but fatigue comes on with very little notice.

[Mood2020]

I do feel the sameThe exhaustion fuzzy head for like 1.5 years etc is what lead me to get tests and therefore diagnosed

I have ET

Out of interest what are peoples platelet levels when they have been feeling these symptoms. Mine is 600 but rising over the years

And what do people find helps? For me it’s sleep too, usually a good nights sleep as I’m not able to take naps in the day as I have a little one

But may try in future to just take a nap when I feel like this

[Cja1956]

Yes, this is a very common experience for me, and is getting more frequent as time passes. I was diagnosed with ET Jak 2 in 2008 at age 52 which progressed to mf a couple of years ago. I am struggling to keep working but it’s very difficult to find the energy to keep going. The fatigue can be debilitating and I always tell my partner that he’s the only one who understands because he lives with me. It’s so frustrating.

[Devilgirl]

I have ET on hydroxycarbamide & yes more so the brain fog - often find I go totally blank which is especially awkward while at work & miss half the conversions / meetings and don't take in what I'm reading. Also find I fall asleep for a ln hour or two early evening on work days.

[Woodlandgarden]

Yes Netty 64, I get fatigue constantly. I have ET triple neg & am on asprin. My platelets were 730, last Setember. Tasks as basic as washing my hair or doing my weekly shop (my one social activity these days !!) regularly exhaust me. A lighthead & foggy brain are also problems I regularly experience , perhaps related to the fatigue ? The symptoms above are the reasons why I went to see my GP in Oct 2018 , & later diagnosed after numerous tests by haemotologist in Feb 20. Stress is a big agitator of our symptoms . At this stage of my diagnosis I am trying to manage the stress out of my life & manage my symptoms as best I can. I was very active physically & mentally prior to the onset of my symptoms.

I try to do regular meditation, walk 4 to 5 km on average each day & drink lots of water. These activities help me both physically & emotionally . However, some days when the fatigue is particularly debilitating, I have to stop my walk for a rest and/or just shorten my walk. My GP has also advised me to sit & rest when I feel lightheaded etc.

I manage to overcome my bad days by taking it easier over the following couple of days e.g. going for a short walk & just doing small routine jobs until I feel a bit more energetic.

I am keeping a diary these days which I hope may help me establish if there is any pattern to the occurrence of my fatigue & my other symptoms 😊

Take care & keep safe,

[souplover]

I have PV and experience the same. I'm with Woodlandgarden. What works best for me is to push myself out to walk every day.

I've also noticed lately that with the PV, stress often leaves me exhausted. Even good stress, like a family birthday party. I sort of plan accordingly now, knowing that I may be wiped out even by good stuff.