Sorry, but all my questions seem to revolve around fatigue !!
Just wondered if others suddenly get hit by this 'wall of fatigue'. Yesterday afternoon I was peeling veg for dinner and suddenly was overcome with tiredness, to the point where I almost went to lay down. It hadn't been an unusually busy day at home, although the only time I had sat down in the day was for lunch, a cup of tea and during my daughters 30 min swim lesson.
It is never the same time of day or doing the same things. Some times it happens when I am driving, but it is quite an overwhelming feeling.
Anyone else suffer the same ?
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rubyrubyruby
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PV for just over three years and this has just started happening with me, usually in the late afternoon/evening. It's like a switch being flicked - go all day feeling fine e.g. pottering about in the garden, then sit down for a meal and instantly feel like I've had all the life sucked out of me. Not a nice feeling - it's just like the batteries have suddenly run down.....
Yes, this happens to me too. My partner can see it - he says he can see me going from looking ok to looking completely drained. I also find that my ability to make simple decisions or to cope with even very minor problems disappears too.
I'm learning not to fight it and Graham is getting very good at very gently and kindly nudging me to rest for a while.
Me too,OK for some hours usually morn. Then the wall of fatigue,perfect description,my husband sees it coming and makes me stop and rest,I sometimes do get to point of collapse,think I'm about to shrug my mortal coil, very alarming.G P has subscribed mild tranquillisers which does help and with the breathlessness that I experience.
...you've probably gathered that you're not the only one to be hit by this wall, it's horrible! The first time it caught me I was driving, not a good experience. I have learned over the years tho' to recognise the signs & just take it easy for that day, or two on occasions. Luckily, my wife is tuned in as well to these signs & we do just 'veg out' for the day. Not sure there's any answer but, my GP has suggested it might be beneficial to get back into a proper sleep routine; like a lot of us I have a very poor sleep pattern & he suggested that I look at a short course of mild sleeping tablets to get back into the routine. I'm nearly at the end of the 10 days & feel so much better. Keep strong rubyrubyruby...
Fortunately I am able to sleep well, usually around 8 hours, so I can't really link it to sleep patterns. I am also fortunate to not have to work so I can't blame it on that either!
I am glad other people understand as I think it is hard to explain to those who haven't experienced it!
I've only just found out I have PV and I've been feeling tired for years. I put it down to adrenal fatigue originally, but now I've had the PV diagnosis, it all makes sense. I think it might be down to the poor efficiency our bodies have at transporting glucose to the tissues and brain due to the viscosity of blood. I'm probably miles off but that is my take on it.
It's something we just have to accept I suppose. Hope you're managing it okay.
Can totally identify with you....seem to be chugging along and then suddenly, extreme tiredness hits and feel need to lie down. Comes on v suddenly and have now come to conclusion it is a build up over days and looking back each time, have actually done more than usual. I have ET and not sure whether most of those replying have PV...the description 'wall of fatigue' really does accurately describe it. Thank you for bringing up subject. Tinkerbell
Yes, that sudden drained feeling is horrible. Come when it comes, no pattern for me , at all. Someone called it brain fog. The thing is, I can be okay after 2 or 3 hours again, sometimes. Not having rested or so, I wonder how that works?
Hi rubyrubyruby .Yes me too. I have ET on HU . Feel good most of the time then whoa ...my fatigue comes still about 4.00 pm , it is so strange it just hits you, I have to sit down with my feet up, it is so draining, you HAVE to rest , but the fact that it is a common occurrence amongst we MPN'ers , is comforting.
Your description of hitting a wall is perfect. Listen to your body. Take care . Sandy x
Oh yes understand completely. Husband and friends have learned to spot the signs before I do - my legs go to lead and head so dizzy. Odd thing is, at the moment I am on such a good patch, best for two years and I almost tend to forget anything like PRV exists in my life. Have not needed to have venesection for months but still waiting to have bone marrow biop. I defo feel better without the venesections and even think I can do my long walks again - going to try tomorrow. Do hope it helps you knowing you are not on your own x
Hiya - I definately sympathise as I get it too and just going through it over last 2 days - I do often get it just before and during my periods so wonder if my pesky platelets are working a bit harder which tires me out more! It's so reassuring knowing that think it's something we all go through and one of the most common side effects but as a lot of you said a bit scary when it just hits you all of a sudden - I've had times when just feel my eyes drooping all of a sudden and had to hit coffee straight away to keep going! I am trying a diet next week which is a bit like clean living so alot less fat and sugar as consultant said might give me an energy boost as just gone back to work after maternity leave and a bit like a zombie - if anyone interested in book I got sent happy to send on but will let you know if feel any difference - am not doing to lose weight but to try and get some energy back and definately fallen into trap of eating a lot of cake and chocolate recently hee hee - it's great to hear a lot of your partners are so understanding and supportive and help you rest etc when the wall hits!!! X
I usually realise in hindsight after I have hit the wall, so difficult to do anything at all, my body just stops functioning altogether with me it doesn't seem to relate to what I have been up too! The only solution is to stop rest and wait but that can be really frustrating. I seem to have clusters of these days lasting for around 10 days then its as if a switch is flicked and I' m back to normal.
Hi, I have every sympathy - the wall of fatigue, legs and arms made of lead is not a nice experience. I had a venesection back in April and after a week felt better. Since that one week of feeling better, I keep hitting this wall and have decided today I am going to make an appointment with my GP to see if I need bloods checked before my next appointment on 9 June. I have also had discomfort for some time under my left ribcage, had this checked at my haem appointment back in Feb but spleen was ok but will ask for another check I think.
I have not found anything that helps with the wall apart from giving into it. Exercise, a healthy diet, nothing is working this time!! Hope your wall goes away soon and you feel better. Kindest regards Aime
Hello Aime, I have just joined and typed in wall of fatigue and found these posts from you all. Your post especially interests me as I also have discomfort under my left rib cage. I know your post was some time ago, but we're you able to find out what it was?
Hi Avarina, No I never found out what the discomfort was. My spleen, etc was checked and was a normal size. Had the discomfort a few times since but it always goes away. Hope you are coping with your illness ok but you have come to the right place if you need any support. Welcome from Aime xx😺😺
Hey guys, I still suffer from these. I'll be doing find through the day, I get good sleep.extra and then all is a sudden it is so bad I have to lay down. It causing some issues for me. And could be cause buy some things. I actually normally feel signs of dizziness first or just disorneintanted. Doc said I was having migraines. I just not feeling the pain of from the head ache. But I get everything else's. Like light sensitive. I have found that taking my emergency migraine meds actually do help me pull throw. Other wise I'm out for the count for a solid 3 hours
I seem to be hitting this wall more and more frequently at the moment, I haven't had my bloods done since January so I am wondering if anything has changed which is causing this. I have also had a few migraines recently too.
I am off up to London for my next appt at the beginning of July so I will mention what has been going on.
BTW I have ET but not any meds except aspirin. From the responses this 'wall of fatigue' doesn't seem to be specific to one MPN or linked to any meds either.
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What does the fatigue feel like?
Chronic fatigue. Any clues? All help appreciated.
