Hi fellow MPN'ers. How do we know, what causes our fatigue? I am REALLY tired over the last few days, what do we blame ET , age, or HU?

[Stevesmum42]

It is such a debilitating fatigue...exercise is suggested many times , but when you are so tired I feel as though running on no fuel whatsoever. Platelets a good 400, on 14 HU a week. Age 71... How do you all cope. Sandy x

[Twinkly]

Hi stevesmum ,I know just how you feel ,I'm the same age group as you so I ask myself is it age or drugs,I think it is the drugs ,because I was so much worse on hydra ,now I'm taking ruxolitinib I'm more with it ,like I was before the P.V, was diagnosed .but the secret is to pace yourself ,each day ,one big outing is enough,for me, if I go out in the evening ,I sit and rest in the afternoon ,planning is important now,small healthy regular snax fuel for energy ,juice and water all day ,honey is great ,never see a lazy bee,do we?? Twinkly. Xxx

[Little-friend-Susan]

Hello Sandy, I am in your age group too and have the same thoughts. I tell myself that, even if I did not have ET, I would be slower than I was 20 years ago. No one seems to know if the condition itself causes fatigue although it is a universal thing from the remarks on this site. I try to keep active and take the dog out for walks at least three times a week but sometimes I have to really push myself out of the door. There is no shame in sleeping in the day if you need to. Better to lie down for an hour than drift around half asleep all day.

Little friend susan

[ourlife]

Hi Stevesmum42, I belive our condition enhances the effects of fatigue, everyone gets tired and age plays a part for all, which is why it is hard for us to explain and others to understand. I agree that time management and diet helps, as for exercise I have improved my fitness over the last 3 years, and while exercising and a short while after I feel good, the fatigue that follows is some times worse than normal, for me exercise is like a drug with highs and lows. Have fun, Ourlife

[LouisePRV Volunteer]

Hi,

I've been banging on about exercise and diet for years.

Maybe it's an individual thing - I'm 60 and on 12 HU a week.

Am rarely troubled by fatigue these days after converting to a wholly organic diet. I don't eat ANYTHING processed, tinned, no dairy, nothing cont chemicals additives or preservatives. No caffe ie, no decaff, no alcohol.

To be quite honest honest I'm probably fitter than most of my porky rather overweight friends. I walk for an hour and half a day, and drink 3 litres of water per 24 hours.

Sorry to sound so pedantic but we can really help ourselves you know, you just have make the mammoth humongous inconvenient effort to do it.

There are no easy answers. It's up to you to give it a go.

Do try, for at least SIX months, if it doesn't work for you then you can cross it off your list.

With very best wishes,

Louise xx

[Tinkerbell13]

Similar age and with ET but think my own fatigue largely due to all the sweats at night and v poor sleeping pattern as a result. Sure, though, diet and exercise are key and if feeling particularly exhausted, get myself walking, and do feel better. Very best wishes and hope you are encouraged by all the replies. Tinkerbell

[Twinkly]

Tinker bell 13. If you have continual broken sleep patterns ,try taking one nite all tablet with a warm drink about half hour before bedtime ,not every night but now and then to get your rhythm back .you get uptight so just relax then drift ,,,,xxx

[mol56]

Just started yoga (beginner's class) felt very relaxed afterwards but also energised for the whole day. I am better on medication, before diagnosed I felt very tired and fatigued (reason for going to the doctor in the first place) but fatigue varies with amount of medication and levels of other blood cells, Just get the dosage right and then blood cells take a dip and medication is reduced. Then platelets rise too much so meds increased. Will carry on with Yoga and see if that helps. I found it better than aerobics or keep fit (even classes for the older person!). Diet does help me, I've given up chocolate for lent (ONLY 2 WEEKS TO GO) and lost a few pounds and feel better for that.

[Nirbhebe]

Hi stevesmum, I have fatigue as well. I'm on HU and have ET. I follow a close to all non processed food diet and I believe it helps me. I find that even 10 minutes of active movement a day reduces my fatigue. My doc says there are so many factors with fatigue. I do believe my diagnosis and treatment have increased what fatigue I might have due to aging. Someone on another MPN list serve said that MPN fatigue was due to the bone marrow being on overdrive, producing too many cells. Apparently this causes overall fatigue. For some reason this explanation helped put my mind at rest about the sort of fatigue "chicken or egg" thoughts.

Peace and joy to you!

[linds]

Hello Stevesmum,

Oh yes, THE fatigue! The exercise is a good idea but when one feels as if one is encased in iron it's hard. I do try and walk for half an hour a day at least, sometimes it could be much more but I am not back to anything like my normal levels. I am in my second half of my sixties and up until 3 years ago walked 4 miles every morning at the very least. I also was a swan rescuer for many years and had energy to chase swans up and down the riverside for hours. The lack of energy was the first symptom for me 2 years ago when I was first diagnosed and although we do lose energy as the decades pass - this fatigue is quite different. Most important thing is don't beat yourself up about it because as someone earlier said, better to sleep for a while in the day than waste the whole day in a dream like state. I do think lots of water helps me.

Best wishes to you x

[Stevesmum42]

Thank you all so much for your kind and caring responses , and for the time you gave to reply... I am taking it all on board, I am not a sedentary person but I really will try to get some more walking into my daily routine, my diet is pretty good but can always be improved. So thank you again, I can't tell how much this site helps . Just knowing you are all there is so comforting and reassuring .

Love and happiness . Sandy xx

[rubyrubyruby]

Hi. I am just over half your age with ET, but for me the fatigue is the most debilitating part of this disorder.

I walked my dogs for about 45 mins this morning and then spent 4 hrs with my kids at a farm park this afternoon. I now feel completely knackered ! I could easily curl up on the sofa and fall asleep as my eyes are so heavy and legs ache, BUT I have to do my volunteer shift at my son's youth club tonight

I get really frustrated that I feel like this too.

[Stevesmum42 in reply to rubyrubyruby]

Hi rubyrubyruby. Thank you for you response, What am I moaning about.....your daily schedule is exhausting me just to read it! Wow you have a busy time, no wonder you are fatigued, you obviously just ' get on with it' what else can you do . You are obviously a great Mum. I hope you get spoilt some times.

All the best to you . Take care Sandy x

[rubyrubyruby in reply to Stevesmum42]

Thank you for your kind words.

Fortunately this is only an example of the school holiday routine but I so wish I could carry out these activities like my friends do without the fatigue!

I think the fatigue is not age related but related to the disorder and platelet levels. I think we can only control some of our fatigue through lifestyle or diet changes, and the rest is controlled by our disorder.

Anyway I am off to bed now before I fall asleep on the sofa !

[Aime]

Hi Stevesmum42, Oh I have every sympathy! Very Fatigued just now - finding it difficult to walk 10 mins, feeling sick and rubbish!!! I am eating healthy, dragging myself to do exercise and sleeping a lot!! Got blood tests tomorrow so will see what they say. Have PV, aged 57, not on HU - only asprin and anti-histamines so can't blame the chemo drugs! Have just started a new job which incurs more travelling - just hoping I can hack it!! Kind regards Aime

[Stevesmum42 in reply to Aime]

Hi Aime. Thank you for your response, I notice you respond many times to people with encouragement and empathy. Since posting a few days ago, I an really pushing myself to g garden sorted (I really don't like walking) so hope this will be a good substitute !! As I am retired I can rest when I need too , but consider that defeatist, so do try to keep active.

But you just have to push yourself to work each day...I do hope this intense patch of fatigue passes for you soon, it does seem to ebb and flow. This is the wonderful thing about this site .we understand how one another feels...All good wishes with your new job, I hope all goes well

Sandy xx

[Aime in reply to Stevesmum42]

Hi Stevemum42, This forum is great isn't it as we support one another through tough times! Had my blood test this morning so will see what the results say. Kind regards Aime xx

[Stevesmum42 in reply to Aime]

Hi Aime. I hope your test results are good. Yes this forum means so much to me, informative , helpful, hopeful, and such lovely fellow people. Thank you again. Take care Sandy xx