The fatigue!

[Aime]

I was diagnosed with PV in June this year after being told I was just depressed! Had two venesections, felt good after first one but not much improvement in fatigue after second one. Itching and night sweats are worse. Been at hospital, told I have definitely got PV but fatigue is not a symptom at level hematocrit is just now - .43%. Could be low iron, but they won't test level cause they can't give me iron tablets anyway. Told to talk to GP - who admits he knows nothing much about PV. Despairing!

[ourlife]

Hi Aime,I have ET and have always sufferd with fatigue,many Doctors have told me it was not related to my condition, in truth they did not know alot about MPD's.there is no doubt in my mind that fatigue is part of our disorder,and it affects different people in different ways.I wish you well in coming to terms with and learning your limitations, please do not feel guilty if you need to stop and take time out.You will see from many posts on this site that fatigue is a common symptom.

[Hidden]

Please don't despair Aime. It is early days and hopefully the consultant will get to grips with a tailor-made recipe for an improvement to your wellbeing. I don't know if they have decided that treatment with hydroxycarbamide or some other medicine is not an option but you must keep telling them how you feel so that they can try other things until you feel a bit better. When I was first diagnosed with PV I was at such a low ebb and even after starting treatment I could hardly put one foot in front of the other and walk any distance at all down the road. I was despairing and thought that this was how I would feel for the rest of my life. It is now 9 months since diagnosis and treatment started (for me one venesection and a daily regime of hydroxycarbamide) along with blood pressure control tablets and I feel I can get on with life again. I still have periods of fatigue and joint pain which always comes with a slight depression. I used to think that the depression was caused by the despondency with my symptoms but I am now convinced it is just part of the whole condition. My spells usually last from 3 days to a maximum of 10 days and then I come out of them and feel like there is nothing at all wrong with me. I have learned to recognise that these spells will keep happening and I have no control over when they occur, but I have accepted this and I can live with it. It is difficult when you have something quite rare and even GPs are not read up on it. I think it would be helpful to us all if awareness could be raised more about the myelo-proliferative disorders to prevent trivialisation caused by ignorance of both the medical profession and the general population. Meanwhile though, believe you will feel better. It is a matter of time and in some cases trial and error. I had no one to tell me this when it happened to me and I have just had to take the journey. Keep your chin up and work with your consultant and your GP and I am positive a better solution will be found for you. Good luck.

[millycat in reply to Hidden]

Just had to comment because your sypmtoms are exactly the same as mine even down to the time scales!! I call them my wipeouts because I can do nothing. I know now to rest and wait, because it will pass. It is still scary when I get a bad one and like you say cannot put one foot in front of the other. Very lonely too 8 (

[Gee1]

hi aimee, i was diagnosed pv last year, following a couple of months of weekly venesections I now only have them every couple of months due to 1 gram of hydroxy a day, my heamocratic levels have been under 45 for months, however, i suffer with near constant fatigue, my heamotologist tells me it is both a symptom of the illness and a side effect of the hydroxy, it appears to me from people I have spoken to or read about on here that the level of fatigue suffered varies greatly with each individual. Just keep on to the doctors, personally I think you will get more joy from a heamotologist than your GP most of whom are quite honest about the fact they are pretty ignorant to the condition. Good luck for the future

[Optimistic]

Aime

First of all fatigue is a sympton of PV and hct of 43 is normal for female and 45 for male. Most people feel better by exercising, gently at first and build it up to brisk walking, swim, cycle , jog, something to get heart and lungs and blood working. All MPD specialists will tell you that. Its probably on the MPD Voice site somewhere. Also when you start having venisections it will make some people feel fatigue because it is lowering the iron level and its a bit of a shock to the system. It can take some time for the body to get used to venisections for some people, eg me 2 years to feel my best. The itch is symptom of PV and again there is probably lots on MPD Voice on that, personally UVB works excellently for me. Overall its best to reseaarch and read as much as you can and join as many forums as you can eg MPDinfo.org. Knowledge is important and calming. Also you need a good haem and again MPD voice may be able to recommend someone in your area. When I started the venisectons I felt all the things you mentioned, however now its settled down so it can get better.

Good luck

[Bry342]

Aime

My husband was diagnosed 4 years ago with PV, and fatigue has been the worst symptom. It is also the one that is ignored and glossed over by all the medical professionals we see. I have started sending papers and research articles on fatigue in MPDs to each appointment he goes to and insisting they file them in his medical notes. The nurse practitioner has now realised this is a serious side effect even if his levels are good. Hydroxy also contributes hugely as when his dose is upped he is worse. We are going to one of the MPD Voice forums next week as I think this will make us feel less alone. Macmillan were also fantastic emotional support although could not help with benefit help as oral chemo is deemed as not debilitating to quality of life!! Keep strong. You have found this site and you are not alone. Xxx

[Aime]

Thank you all so much for your support. You don't know how much it means (well you probably do) to speak to people who understand. I just wish you all the very best and will keep in touch. Aime xx

[nicki2]

i suffer from really bad fatigue from having et i am also on hydroxcarbamide i do not work as i had a brain op 5 year ago which there was a lot of damage done to the spine and suffer headaches i have to go for a lie down for a couple of hours in the afternoon but unsure if it is the et or the hydroxcarbamide

[harleydavidson]

Hi Aime

I was diagnosed with PV seven years ago, am still only treated with aspirin and venesections 2 or 3 times a year. Had one yesterday as my heam was above 45% and I was suffering bad headaches. I always have to take the day off work afterwards and sleep most of the day and night, but although i'm still tired I am back in the office today.

I changed my full time property maintenance job 13 months ago to a 33 hour week desk job as manual labour had become to much for me and I now sleep for a couple of hours most afternoons, but always take the dog on a high paced long walk when I wake. Exercise does help me get through the evening jobs and perks me up.

The fatigue is part of this condition but isn't always bad, your body will get used to the changes in blood counts and you will learn to listen to your body and rest when you need to.

I really hope you feel better soon!

Mel xx

[Aquaphobe]

I was diagnosed with Pv in April 2009. I suffer from regular fatigue. For instance I have had a good nights sleep , got up and have done a few simplehousehold chores this morning but could happily go back to sleep and it is only twelve noon.. I find that I have to push myself and if i do then i usually find I can do more than I thought. I am still working full time. I have occasions when I feel so tired andi do give in. There are some papers on the MPD website which i read early on and it said that that exercise was good if you feel tired. I play badminton every week regardless of how I feel. I cannot say it makes me feel better afterwards but while I am playing it takes the fatigue away. I think we all get used to understanding what we can and cannot do but it takes time. What is important is we can draw support from each other as it is difficult for the outside world to appreciate what it is like.

[Aime]

Thank you all again for your support. Aime xx

[billylipton]

John

Hi I also have PV & ET as my platelets were also off the chart , on Hydrea & asprin , did suffer some fatigue, but have not had fatigue now for nearly 4 years. The answer is exercise it has to be aerobic (ie raise your heartbeat ) and endurance ie for a resonable time. The Drs do know this works but not how one theory is the release of endorphins to the brain, but no research has been done.

I have given a couple of talks on this at mpn seminars in the UK( have a look at the mpn voice website in the uk I am in a video ) in the hope of helping people out of the fatigue, some have actually tried it & its worked for them to. My particular exercise is cycling something I have apassion for as I have Cycled & raced for most of my life, so it was easy for me to just continue when I was diagnosed. When the opportunity came I took early retirement & so was able to do more riding. I now consider my riding not as training but as medication.

Of course its not the answer for everyone , some are just to unwell, & you must consult your Dr first to make sure its ok. If you get the OK & you want to kick the fatigue then go for it.

Start very slowly & carefully & build up, keep a diary of how you feel & like me consider it as medication so you do it at set times each week that way you will be less likely to give up. It will take time & it may not be easy depending on your level of fitness now, but it will work. I am sure most people will get some measure of improvment . Good luck let us know how you go on.

[Dazakella2010]

I have been told that the levels are irrelevant to symptoms.... just because you numbers are on the lower side doesn’t mean to say you can’t have symptoms.... my platelets are now ranging from 350-650 and I have had a headache since February 2019 non stop.... the fatigue is extreme... I wonder to myself if I’m ever going to feel like the old me again. I started on hydroxy and am now on pagasys

[Aime]

Hi Dazalella, sorry to hear you are suffering from fatigue. Yes agree numbers and symptoms don't always correlate. Persevere with getting answers if things are not improving, after it's your illness and you have to put up with it. You probably are drinking plenty and eating well but don't feel guilty if u have to rest. E hugs from Aime xx😻😻