Fatigue not consistent with blood counts

[Aime]

Just had Hct result .41 which is good but the fatigue has been quite bad this week and so has the itch!! I thought a pattern was forming with blood counts being related to symptoms but just feel I am back to square 1 again. Has anyone been like this and sought a second opinion and received some answers?

[Hidden]

Hi Aime like you my counts are good. However, I still struggle with itching and the fatigue is particularly bad at the moment. The Consultant said at my last appointment even though my counts are under control, I can still experience ET symptoms.

[Aime]

Thank you Mallard, I have just felt so bad today at work and had a week of itching! I really thought my count would be high but it is about the lowest it has ever been. I have felt so sick and fatigued that I went home early. I guess I will have to learn to put up with it! It is so hard to plan for outings or weekends away because if I felt like this - it would spoil my break. Thank you for your support. Best wishes, Aime

[corrins]

I am exactly the same, been feeling really bad, flu symptoms,aching joints exhausted and was sure my bloods were bad but they were fine. It's good to no I am not going daft or imagining things. X

[Jo_L in reply to corrins]

Is it possible you could actually have flu?

As someone who has had MS for a long time before developing PV and ET, I have learnt the importance of not assuming that all symptoms are related to conditions I am already aware of!

Hope you feel better soon,

Jo

[BlessedWithSix]

Same here. The pain is incredible. I am going to ask doctor for pain medicine this week. Any suggestions?

[ABman]

Hi folks,

I've had prv for 7 years during which itch and fatigue have been my worst symptoms (other than a pulmonary embolism, which put me in hospital). Symptoms and effects have varied over the years, with many 'new normals' along the way. My doc sent me to a specialist who prescribed Paroxetine for the itch. As he said, it has not eliminated the itch but has reduced it about 80%, so I do recommend it to you all. Luckily, I am now retired as it would be impossible to keep up a regular job.

[Aime]

Hi folks, thank you for your replies. It is comforting to realise, like corrins says that we are not cracking up. I am on holiday for a fortnight, have slept at least 10 hours every night, done very little through the day and can hardly put one foot past the other yet as I said my hct is .41, the best it has been for goodness knows how long! I was out to a retirement do on Saturday and by 9 p.m. was totally exhausted and feeling awful. I was not drinking alcohol cos that seems to make me worse. Well away to drink gallons of water to see if that will help and push myself out the door to try a short walk! Take care everyone, Aime

[jazzyb]

Hi Aime, I was diagnosed with PV in 2007 & have always felt the same (rubbish) whatever my counts are. I've come to the conclusion that even if our counts are well controlled the problem lies with our bone marrow constantly working overtime & therfore causing all the horrible symptoms. I try to carry on as 'normal' & work part time, this works best for me although can often be a struggle! I also find dog walking is good for my well being. Take care. Jane.

[Aime]

Hi Jane thank you for your reply. I do know that symptoms can continue while blood counts are fine, I just needed some reassurance and cheering up! Feeling sorry for myself again!! My gallons of water and my forced walks (they were a struggle) yesterday seem to have helped a bit. Away to drink more water and plan my walk where there are plenty of toilets!! Many thanks, take care, Aime

[dorotea]

Remember that you still have the illness Aime even if your counts are good at the moment. That is the conclusion I have come to as have still felt tired even when my platelet counts have been acceptable (not normal). Do you have

to work? It helps if you don't as you can rest more . I am retired but used to get so very tired when I was still working.

God bless.

[Aime]

Hi Dorotea

Thank you for your reply. I know I do try and forget sometimes that I have PV. I think working keeps things bit more "normal" for me if that makes sense. I am off work just now following a thumb op. Went to get my plaster off on Thursday to learn my wound has overhealed (granulation). The surgeon tried to snip off the extra flesh (ouch) but then decided to burn it instead so a few trips to the hospital these coming 2 weeks. My plan is to cut down my full time to part time work once my job is sorted out. I work for Police Scotland and civilian staff jobs are going through change just now!!

Never mind, the joys. Take care, best wishes Aime

[dorotea]

Hi Aime - Never had heard of an overhealed (granulation) wound, but it sounds quite nasty - hope the burning is not

too painful - poor you! Hope your thumb will soon heal up as it should. It does make sense to go partime at work

if you can - hope you can get it sorted soon. - I did that before retiring as used to get so tired -at that time I did not

know I had ET, but do think I must have - was diagnosed years later. All the best. Dorotea

[janesid]

I had my last haematology appointment on 17th January and was sure my platelet count would be up as I had been so fatigued since before Christmas. However my platelet count had actually dropped from 510 to 440 - which is in the normal range (just about). I am so tired but no amount of sleep/rest helps.

[Aime in reply to janesid]

Sorry to hear this, every sympathy best wishes Aime

[lizzziep]

I feel tired a lot, fortunately I am retired so don't have to struggle to work. Our youngest son is getting married later this year and it's going to be a long busy day, I am sure I will fall asleep in a corner somewhere and miss half of it. (And probably be presumed drunk!) I've been trying to gradually stay up later - not very successfully! I never know who did it on Midsomer Murders! I haven't been very itchy lately which is a bonus!

Hope reducing your work hours helps.

Lizzie x