Another bout of fatigue

I've posted about faitigue before but feel I need to again.

Just on my 6th day of a long bout of extreme fatigue, this is the longest I've had, usually last around 3-4 days then I'm back to normal. This bout has been the worst, I must of slept 18/24 hours for the first 3 days, not been able to function properly, just having a bath sent me into a state of overwhelming tiredness. Now on my sixth day and getting better although the tiredness still there I know it's coming to the end.

I can always feel these bouts coming on and do try to ease it by resting but it seems it is determine to take over my whole body and will only go when it's ready.

It is so debilitating, I feel useless, the only other symptom I ever get is a very slight sore throat, this doesn't help when others see you with no symptoms as they think it's just laziness and often say get up off your ass and you will feel better, if only eh.

I know once my body has recovered from this bout i will be sprightly and fine again, but for how long this time? The bouts seem to be getting more frequent, used to be few times a year now it seems every 2-3 months. This bout has really taken its toll and I just want back to normal.

I'm 43, eat reasonably well, am not overweight, I do gentle exercise, not sure what else I can do. I do work shifts early late and night shifts which I don't think helps and I'm hoping to change this.

I'm on hydroxy 1500mg daily and 75mg aspirin for ET.

Sorry for long post just wanted to give you a feel for what's happening to me at the mo and hopefully get some replies as to others experiences.

Justin.

X

9 Replies

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  • Hi Justin, I have every sympathy. I am sleeping like a log through the night and need a sleep most days through the day also. I went to Asda today and while I was packing shopping my arms turned to lead and I really struggled to carry on, my legs felt really weak and heavy too. I am blaming the fact that I had an unnecessary venesection so I am hoping that is the reason as this is the worst I have been!!

    I have PV, diagnosed 2012. I am overweight but losing some at the moment, eat well (apart from chocolate), exercise as much as I can drag myself to do. Like you are doing, I feel I am doing everything I can to improve but not getting out of the bit at the moment. Luckily I am on holiday now until 5 January.

    Sorry I can't give you any answers, I notice good hydration does help but none of my other tactics seem to. Just to let you know I sympathise, I'm thinking about you and hope you come out of this very soon because I know how debilitating and frustrating it is - especially if you still look reasonably healthy!! With very best wishes from Aime x

  • Hi Steve totally understand I struggle with fatigue too. Not only is it a nuisance but it can feel very lonely when you always seem to spend time in bed for hours on end. Just make the most of the good times. X

  • Sorry Justin (where did I get Steve from ????)

  • Hi Justin.

    Sorry you are feeling so rough. I have had PV for 10 years and started on interferon 1 month ago, at the same time my daughter gave birth to my grandson, split up with her partner and moved in with me, taking over my tiny house with all of her and his belongings and without a penny of income. She has been poorly ever since so I have been going to work, coming home and cleaning up and helping her as much as possible with the baby whilst she catches up on sleep. I have not had the chance to consider the side effects or to feel sorry for myself but I am so very tired and struggle to put one foot in front of the other. I did mention to her at one point that I was exhausted but she quickly pointed out that she was the one having sleepless nights and that I had not offered to do a night shift yet. I work 6 days a week and just can't cope with a night of feeds and nappies as well. I know how you feel and how it gets you down and hope you feel better really soon. Mel x

  • Hi Justin

    I'm 44 (and male, the last time I checked). Your symptoms read like a mirror of my own. I have PV and on aspirin because the haematologists are still trying to discover what the cause and treatment should be.

    I too get the fatigue you describe, and it also stays longer each time I get an episode. The gaps between episodes also appears to be shortening. One thing you don't mention about your symptoms though is depression. I can tell when an episode is coming on because not only do I feel less energetic, but I also start to wake in the morning with a horrible stomach knotting depressed sensation. Just the thought of starting a new day is awfully depressing. The depression comes and goes in waves during each period of fatigue.

    My investigations have led me to believe that my symptoms can be largely controlled by elevating my cortisol output. Obviously, my relief and solution is totally individualistic and won't necessarily apply to yourself. Nevertheless, my message and advice is to check your blood counts for possible levels of deficiency or even "above normal" elevations, of some hormones and nutrients (cortisol, vitamin D3, B12, testosterone, oestrogen, prolactin, ferritin etc.). If it turns out there is an anomaly then bring it up and discuss it with your care provider.

    By identifying and resolving some other health issues you might in turn be able to reduce the length and severity of your fatigue symptoms. I certainly did!

    As I said though - and to reiterate - my condition appears to be helped by increasing cortisol levels. However, most people usually pump out too much cortisol, so don't assume increasing it is the likely answer because it most likely won't be. Suffice to say, it is worth spending a little time analysing the accompanying results of your bloods along with the stuff that is vitally important to monitoring your condition.

    I hope and trust your symptoms are coming to a close for this occasion. Good luck, Merry Christmas, and best wishes.

    Craig

  • Hi Justin, really sympathise, though 30 years your senior! Have this strange sore throat every time fatigue hits....think you just have to 'go with it' and your body telling you you need to rest and rest at these times. Have a feeling you also have the added problem of 'guilt' which is because we aren't walking around with broken legs and covered in plaster, and no one can actually see. But know you will get a lot of support, encouragement, also sympathy, from fellow sufferers. Very best wishes and hope energy returns sufficiently for you to enjoy Christmas. Tinkerbell 13

  • Hi Justine

    I'm really sorry to hear how badly this effects you and sympathises with what you are going through, I get some bouts of fatigue but nothing as severe as you describe, I think you should review your shift patterns as this under normal circumstances can be debilitating let alone if you have one of the many blood conditions. Try to record when they come on and if they fall in line with the shift changes as an indicator of how these effect you? I'm often worse if I get broken sleep or am away from home in a strange bedroom, lack of my normal sleep pattern really effects me so if your changing from one shift to another this could be your solution, I had to give up shift working in 2007 shortly after discovering I had PV, it was the early starts that did for me getting up at 4:45 for a 6am shift, my employer wasn't interested offering to put me on permanent nights or redundancy as my options so I opted to leave. Now working from home on days makes a massive difference.

    I hope you recover as best you can and wish you well going forward, all the best, Mick.

  • No dont say sorry !! This is amazing help for me !! Only just had the JAK2 positive gene discovered, 6 weeks ago, full results on Dec 23rd, but this explains soooooooooo much. I have been calling myself lazy, cant work out what was wrong, no drive, no vision, down, mornful . Very good at beating myself up, so did that alot !! .... so helpful to find someone else that I can relate to. Been going on for about 18months - could sleep for two days at a time ... Crazy !! Thank you so much for sharing xxx

  • To everyone who has replied,I have some or all of these fatigue symptoms,I actually did collapse into my super market trolley a few weeks ago,and you feel so stupid!!I am told so often 'you look so great ,you cannot be ill'.....if only.....However,my Dr is sending me for echo graph and Doppler to make sure the blood is flowing and returning as it should.....I go in Xmas Eve,to the Clinique....how is that for a Merry Christmas!!!Maybe some answers to the fatigue that do not show on blood tests? Will post findings if they are of relevance.I am PV 5years now,blood test every month,Hematocrite stubbornly high for 3 months every other test perfect,the extra Hydroxy has made me even more weary,depressed,and struggle with my work ,walking dogs and just about all I usually keep going for....Best Wishes all of you for Christmas and2015 ,at least we can commiserate with each other on this site and feel less alone with our problems....

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