I have ET, platelets around 800, on aspirin and am 37 with 2 young kids. Although I don't work full time I walk my dogs for around 1-1 1/2 hrs each day and do voluntary work a couple of mornings a week, plus all the domestic chores that come with a busy family. I average about 8 hrs sleep a night.
I am interested to know if the fatigue hits us all in the same way.
I would describe my fatigue as something that hits me like a wave. I can feel fine one minute and suddenly have an overwhelming feeling off tiredness. I can be driving, walking or even washing up when it happens. If I give in to it I can often feel worse and then find it hard to get off the sofa. I wouldn't say it is tiredness where I can fall asleep but more whole body exhaustion if that makes sense!
In the evening I can fall asleep from the point at which I slump on the sofa, anytime from 8pm onwards. The only way to stop this is by keeping busy but actually I really need to sit down and stop at this point in the day.
I really don't think other people quite understand how this feels! I am interested to know if others suffer in this way or is it just me?
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rubyrubyruby
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Hi Ruby, I have PV and find the fatigue is the worst symptom to deal with. Not too bad just now because I had a pint of blood taken off a week ago. So at the moment I get tired, but a rest helps. When the real fatigue hits, rest, water, exercise nothing helps to get rid of it. I also feel really sick and have to go and lie down and shut my eyes. I can't even watch the TV. It is as you say, overwhelming. I can sometimes walk through it but it gets to a point I have to give in. This does seem to tie in with my blood being the thickest. Even though I can just get tired just now, I still need about 10 hours sleep and can fall asleep on the sofa in the evening no problem. I am 55, working full-time but my kids are grown up so that makes it easier for me. I agree, I don't think people understand - apart from yourself and the others on MPD blog! Best wishes - I have every sympathy and do understand!
Hi Ruby I can so relate to what you describe. It can spoil my life at times as I am normally such a bubbly fun loving person and when tired I can become withdrawn and unsociable and just can't be annoyed. I have tried everything, exercise, motivating myself, but when it envelops me, I have to go with the flow and just give into resting. Thankfully it is not all the time.
I agree too about the fatigue, i feel fine one minute and think I'm having a good day and then the next minute I feel like if hit a wall, everything aches and my limbs feel so heavy. Sometimes it does feel like flu. I find it really frustrating that people don't understand because I look fine. I work full time and often very long hours so when I sit down on the sofa of an evening its lethal. I find this site a comfort, I can see that I am normal. Good luck everyone.
I have PV and only manage to work 30 hours a week, so I admire those of you that do more.
I sleep for 2 hours most afternoons and 8 hours each night, yet still wake each morning feeling like a zombie. I feel like the laziest person in the world and am always disappointed in myself for being so tired. My teenage daughters and sometimes even my partner seem disapproving of my sleeping so much or not having the energy to get on and do the jobs I know I should be doing. Lets hope the spring gives us renewed energy! Melanie x
Exactly the same Ruby. I used to have insomnia and sleep disturbance and put it down to that but now, having got rid of some stress I can sleep for 8 hours a night. We try to go out every day (I am retired) and get exercise through walking. However,just as you describe, the fatigue comes over me in a wave and even when I am resting after tea and doing my crossword and sudoku, which is my nightly ritual, I find sometimes I don't have the strength to hold the newspaper and have to have a snooze. My compulsion to finish my puzzles means I do sit up and get on with them again sometime before bedtime. Is this sad?! We have come to terms with this pattern and I agree it is others failure to understand the overwhelming fatigue that can make us feel worse and that we are thought of as lazy. You aren't lazy, we all know this.
Hello All, I am very interested in this thread, I have ET am aged 47 with two grown up boys and a fifteen year old. I have a dog that I work everyday and find that helps with fatigue, keeping balance, regular sleep pattern eating well etc... but similarly to Ruby the fatigue comes in waves, and a feeling of whole body exhaustion and can quite frequently could sit on the sofa all night. I think the secret is balance and being kind to ourselves, I do practice yoga, with lots of breath work (prana exercises) the power of this holistic exercise should not be underestimated and I think can help with sypmptoms.
Just recently I have experience a lot of burning symtons in my limbs and have had some night time sweats. Which have been a little concerning. I am sure this will resolve with lots of water, good sleep, food and yoga.
This is my first time on forum. I have been living with ET about 4/5 years
This is something I have been mulling over for some time as it was my complaint of chronic fatigue that finally led to my diagnosis. I am 44, have been diagnosed with PV and ET and have been suffering with fatigue since 2007. At first the fatigue would be totally random, come on quickly (over a few minutes) and last for up to 2 to 3 days continuously. I was bed bound for this time. It wasn't possible to push through it, I simply had no energy whatsoever.
Following an intensive course of venesections and being put on chemo my fatigue has changed. Now, like you, it comes on suddenly in waves, but it is now less intense. It is possible for me to push through it now, although sometimes this works, sometimes it makes it worse. I now also get other symptoms with the fatigue including nausea, brain fog and migraine. The best way to describe the sensation is like suddenly feeling like I have been up working without sleep for 24 hours straight. I am still at the stage of trying to work out how to live with my particular combination of symptoms and I wish you all the best in doing the same.
Fatigue is also one of the symptons I experience from ET and comes to me in the same way as you all describe above. If I stop then I find it hard to get going again, other times I work through it and do cope. I usually make the call whether to rest or keep going dependant on what needs to be done. Exercise helps if I get that done in the mornings and yoga definately is rejuvenating and makes me feel sooo much better no matter what time of day I do the yoga. Other days its bed and couch for the day. They are getting less often the fitter I get.
I hope it is of as much comfort to everyone else as it is to me that I am not ' making up ' this feeling of fatigue as sometimes I really find myself questioning whether what I feel is real and not in my head!
Although I've only been diagnosed with PV a few months and had one venesection I can identify fully with what you've said and with the other people on here.
Mine comes over me in waves, fatigue, cronic lethargy, hot sweats, migraine type head aches and brain fog. I try to push through it and go for a jog and I usually find it helps for an hour or two but during a jog I find I start to drain till I'm walking then after a couple of minutes I find I can jog again.
First thing in the morning I can barely walk for a few minutes as my feet cease up - does anyone else get this? Along with the hot spots. Right now I'm starting to get light headed and dizzy spells again, so I'm expecting another venesection soon........
I do find a combination of rest, good food, lots to drink and exercise helps.
Hi, just along similar lines to others. Fatigue has been with me on and off for a couple of years, but only recently diagnosed. the worst I find is if I have a long drive to do It comes on suddenly and is a little frightening as I have to get off the road and load up with caffeine. it does work though and then I can keep going. I do think keeping hydrated helps, and it is great to hear that others are finding yoga helpful as I am hoping to take this up soon. ( I'm 44, have ET, work full time and have a young son).
Hi I am only 2 weeks after venesection and fatigue is beginning to get worse again! Next blood test 28 Feb so we'll see what that says. Interesting about the sore bones. I have bursitis in my hips and osteoarthritis in some joints but the pains have been getting worse recently so do wonder how much of the pain is due to PV. Got my ct scan on 1 March and follow up appointment with haematology on 6 March so maybe get more answers then - I hope! The fatigue is definitely not in our heads! I wish it was - it might be easier to get rid of. Sometimes I can push through the fatigue, other times not. It is starting to get difficult again to push through it. Best wishes to everyone.
Hi - meant to ask does anyone else feel really sick with the fatigue? When it is at full force, I have to go to my bed, can't even bear watching the tv! It makes me feel more nauseous.
This forum is excellent as we all get to realise that our symptoms are similar. My fatigue is constant and I find that if I stay active I can push through it. I am 54, diagnosed with PV in 2009. Although I push on and stay active i do have to stop and just give in from time to time. I find that i can sleep all afternoon and still have a long nights sleep, and thenstill feel tired. If i do not get out of bed early in the morning ( even if I feel like a zombie ) I know I will just sleep the day away. I have a full time job, so I choose to work from 8.00 am. I was on interferon and assumed alot of these symptoms were due to the drug but it seems as if it is not, from the comments here. I am currently on no medication except aspirin after complications with the interferon.
I have to force myself out of bed in the mornings, and force myself to keep going throughout the day. At work my colleagues say "you look tired" but you keep going. I get home cook dinner and then collapse on the sofa, and that's me done for the night. Since having ET and being on Hydroxy I have forgotten what it feels like to have energy.
HimRuby, I used to be a morning kind of person. Now, I usually wake up and think, oh no another day! I take longer to get going, and after lunch is another time that I feel tired. Some days I go to bed in the afternoon, just to get it over. However, the more I cycle, the better I feel. My optimum amount is 100 miles per week. If I do that, I have no pains or tiredness and I feel on top of the world! I am no longer at that level, but I am slowly building back up. I honestly believe, the more exercise, the better! So good not to feel alone anymore! Claire
Whatever you do, don't beat yourself up about fatigue. Sometimes it feels like I have drain holes in my feet or something, where all my energy just drains away. Be upfront with people and tell them exactly what the symptoms are like, and they will be more empathetic. I do get good support that way, and can almost overcome all my guilt for not producing more during my day. I try to just accept and go with the flow. One thing, since a heart attack last summer I've had fewer of the phantom pains in my extemities, although they can be a bit shocking when they hit all of a sudden. Strange, but I don't get them at night that I know of.
Hi
I too have the overwhelming feeling of tiredness which is normally during the day, working full time I do need to just work through it, it passes but I am told I look extremely tired when this occurs.
I know it is hard for us but there is some comfort knowing that its not just me, it is so hard to explain to others what happens.
Does anyone else have severe cramps in lower legs and patchy skin changes in lower legs. I am not sure if this is vein pain if there is any such thing.
I have the exact same feeling. Mine is caused from Fibromyalgia. It is very disconcerting. I feel like I could just go to sleep right where I am at. Of course it is not that kind of tired so there is no relief from sleeping with FMS.
I have ET and iron deficiency Anemia. My fatigue was always standard, run of the mill, plain old fashioned tiredness until the past couple of weeks. For the past few weeks I have this intermittent feeling of total body and brain exhaustion. It feels as if I took something but didn't. My body does not want to move and my brain does not want to think. When it hits I need to lay down then after laying down for a bit it passes. I messaged my provider about this but have you received any answers yet?
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How bad does your speech get?
How does ET fatigue progress?
How severe is your bone pain in E T & is this made worse or better with treatment ?
Second opinion
1000mg Hydroxy in one dose or 500 a.m. & p.m?
