Excessive sweating

[tissi]

Hello all. We have just returned from a 10 day holiday to Menorca where it was very hot. Before we went hubby had a red count of 49 and they tried to bring down to 45 with a venesection. But the blood was so thick they could only get out about half what they wanted but they said he would be fine. When away he had excessive sweating, even in an air conditioned room. Is this because his blood it still too thick. His next appointment is for ten weeks so by that time his count will be high again. He has never had excessive sweating abroad before. Thanks.

[Aime]

Hi Tissi, I am no medic but have PV. I can certainly have excess sweating even in an air con room when I need blood taken off. If you are worried you should go back to the docs and ask for a blood test. Although they took off some blood you have no way of knowing what his red count is and ten weeks is a long time to wait. That's what I would do, hope it helps. Kind regards Aime

[mark382]

Even when my blood counts are normal" I still feel warm. Wear short sleeved shirt when others have wooley jumpers and coats of. Spend half the night outside the duvet, summer and winter. Holidayed in the UK and spent most days in the shade, one had to have ice packs on me as I felt so ill. Mentioned it to my haematologist this week and she said it was normal and need to keep an eye on it, what ever that means. I have PV and on venesections and aspirin. Feeling hot and sweating looks to be something we have as the norm for this condition.

[Aime]

Hi Mark, yes the recent heat was a killer. Some days I felt quite ill too. I am definitely very sweaty just before blood comes off but you are right, like you I do feel hot at other times, especially in the morning! I have been coming out in some really cold sweats lately. As you say, looks like we have to put up with it - maybe save on our heating bills unless the rest of the family complain!!! Regards Aime

[skodaguy]

PV is a cancer and lots of cancers can interfere with body temp control. Ever since I first got PV I have been more comfortable in cold rooms. Never found my counts had much of an effect

[linds]

Hello, I have had these hot sweats for ages and put it down to my age until I was diagnosed with PRV jak2 pos 18mnths ago and realised it was all part of the condition. At night I swap between shivery cold and soaking hot and have found that the freezer wraps for muscle injuries placed around my neck work miracles during these humid nights. During the day I always have a fan with me and bottle of water (bit difficult for a man to have a pretty fan though). Can't put much make-up on, even in winter, 'cos it just slides off!

I have not noticed that the hot flushes diminish after venesection (every two months at the moment) but I do think I am less exhausted for a few weeks. Due for next appointment next week and can't wait because the tiredness is so annoying and however hard I try not to let it interfere with my life, it jolly well does. Fortunately I am 66 and not working so feel grateful for that. I used to walk miles literally every day which living by the River Thames has been such a pleasure - just can't seem to do it now as after 15 mins just can't put one foot in front of the other. Can anyone give me advice as to how to 'pace myself' as my specialist says and have others been able to overcome this strange lethargy. If I am honest I think this exhaustion has been the hardest thing to adjust to. Hey ho - could be worse I suppose.

Also, I have found that when I get a dizzy/spinning day, taking a good travel pill seems to help substantially.

So good to be able to share as don't know anyone personally who has this strange thing.

Best wishes,

Linda

[tissi in reply to linds]

Thanks Linda. It is strange though because my husband has only been sweating like this for the last three weeks, never before. He had had a stomach bleed and it took two years for his anaemia to resolve and now his bone marrow is active again with a high red count. His consultant has increased his hydroxyl to two a day now but we know his count is still high as it was 49 and they could not take enough blood as too thick. He is speaking to his consultant today. Let you know how he gets on. Thanks again. Hope you feel better soon. x

[Aime in reply to linds]

Hi Linda, like the freezer wraps tip! I find I can't wear blouses or anything with a collar just now, otherwise I just overheat and sweat! Can't stand clothes near my neck!! Sounds a good option for my spinning days too. got a blood test next Monday so will see what that brings!! Kind regards Aime

[mark382 in reply to linds]

Hi Linda, I have days where I just can't open my eyes and sleep all day. The tiredness is the worst part. After a venesection I feel tonnes better, like having a lead fur coat removed. I know it sounds strange but the way I describe it o people is that I can now feel my arms and legs and the air on them and not I'm not just sitting in my head looking at the world through my eyes and driving this machine called my body. After my first venesection I thought they had given me something - I was a high. Said I would back tomorrow if that's how it made you feel, which was pretty amazing for someone who hated needles.

If I'm feeling tired I tend to push my self to go for a walk - the dog is very good at making me do this. I must admit after a walk I do feel better initially and then just fade.

Will try the freezer wraps as I do feel really ill in hot weather - hematologist told me to keep out of the sun at first appointment and also told me to drink 2 to 3 litres of water a day which I do most days and it does make a difference - drink even more in hot weather. Only problem is having to be near a loo - thinking of writing a guide book of public conveniences of Great Britain!!.

Thanks mark

[linds in reply to mark382]

Hello everyone. Thanks so much to all of you that have replied to my note, it really does make such a difference to know one is not going mad - the next time I have a day of complete tiredness (last one was last Tuesday) I will relax into it knowing not alone and like most things it will pass. Fortunately, have unbelievably understanding husband who although is sad at the changes in me, never grumbles except if I ask him to dust! Mark, I like your descriptive piece on the tiredness - friends are getting used to me either leaving functions abruptly because of it, or, cancelling at the last minute.

Now tonight, it's one of those nights when can't sleep because of restless legs maddening because I had a really good day when energy kept going even after trip to London. I fell into bed around 10.30 woke two hours later and that's that - have a bit of heart burn too and run out of Gaviscon!!!!!

Anyone else awake out there?

Said goodbye to our last dog five years ago and do so miss one in our lives, maybe one day another one will come to join us because whatever happen they do need to walk.

I hope the freezer wraps help others as they do me because I know just how you feel when you say 'feel ill' it's shocking. When my GP knows I am coming to the surgery he apparently puts the air con up to it's highest level - sweet of him don't you think.

All the best everyone, I am glad you are there. Linds

[Aime in reply to mark382]

Hi Mark, like the "lead fur coat" expression! I do feel better on the third day after venesection, first two days are wiped out days. Hi Linds I go through spells with restless legs through the night - I know it is really annoying! Yes, I leave functions early or cancel too. Walking helps me apart from the time really close to venesection being needed - then I have the lead fur coat on and can't do anything much!! Hope things improve or you all find them easier to deal with. I am trying to take things in my stride now - my previous attitude was to get all up tight about a new or annoying symptom and found I made it worse. Take care, I think we will all need a copy of Mark's book!

Kind regards Aime

[mark382 in reply to Aime]

Hi to all, I've always found it difficult to explain to others how fatigue feels. Glad you like and relate to the expression "lead fur coat". Thanks Mark

[laraine]

What is Pv? Why do you have blood tests? Does it have anything to do with PD.?please let me know. Need help with the sweating as I say previously?