Feeling blurgh!

[Vicky_b]

Hi everyone

I hurt all over, have a thumping headache & am so tired I can hardly get out of bed today.

I'm getting the results of my blood tests for suspected Polycythemia tomorrow. If it is confirmed, Could that be causing me to feel like this or is it coincidence?

Thankyou

[Inca]

That's me today too! I am P V 8yrs now....so get the awful fatigue,sometimes I force myself to get up and outside,walk with the dogs...then I have to rest .

It's an M P N thing we have to cope with.Hope your tests are good,just had my monthly blood test,then it is a bit stressful waiting for results. ,hoping all is ok!! All the Best to you Vicky,don't worry too much,you will get thru,we all manage one way or another!

[Jacqx17]

Hi Vicky_b

That sounds like how I describe myself most days when I'm having a not so good time with my MPN, I've had my PV diagnosis since Jan 17, but the way you feel is virtually the same words I used when I first went to my GP back in Nov 2016.

As Inca says, it is all part of mpn, and you will cope one way or another, I literally haul myself out with the dogs, and I find I am much better for a week or so after Venesection.

Lots of people on here have excellent advice on how to make yourself feel better and cope with the off days, they have helped me so much with their support, and also do remember you have to give yourself time to adjust to your diagnosis if it's confirmed.

Good luck and Let us know how you get on with your test results.

Best wishes

Jacqui😊

[Vicky_b in reply to Jacqx17]

Thankyou. I'll be glad to actually (hopefully) know what I've got tomorrow

How often do you have venesections? Do you take medication aswell?

Do you find your symptoms vary much from day to day? X

[Jacqx17]

I started with weekly venesection for a few weeks then went to monthly, then every 6-8 weeks but this time I'm trying 12 weeks, i was ok for about 9 weeks but I have lots of the troublesome symptoms back like severe fatigue, body pain, and blurred vision, so I'm phoning the hospital tomorrow to see if I can have a blood check.

The only meds I'm on is Aspirin but the last time I saw the haematologist he said about me starting something else.

I can have such good days, full of life and energy, and then bam it just hits me, I used to fight it but I e learned now to just rest for a few hours/day or so and to drink 2-3 litres of water a day, that in itself makes a huge difference, you'll see water being mentioned on here a lot! But it really is game changer in how it makes you feel.

I really notice it if I haven't drunk as much as I should.

Lots of lovely people on here also talk about eating healthy too, which when I do, again I can feel the benefits but I feel so unwell sometimes I tend to comfort eat, and cake is sometimes the only answer haha!

I think though from what I've read, as time goes on, you sort of settle in with the ups and downs of the mpn, and coming on here really helps.

Hope I've not rattled on too much x

[Vicky_b in reply to Jacqx17]

Thankyou so much for your reply, it's really helpful.

Sorry to hear you're feeling poorly, hopefully the hospital will see you soon. It's good to have stretched yourself as long as you can.

What do your blood levels go up to & what do you get them down to after venesection?

I just want to get tomorrow over with!

[Jacqx17 in reply to Vicky_b]

Good luck for today🤗

Try not to worry too much if it is PV, there's lots of people on this forum who will give you support and tons of helpful information.

As for my blood, I originally started off with Hct at 67 but the target is 45, once went to 39 but was too low for me, I generally have venesection when I go anything over 45 as I seem to be quite sensitive to the slightest rise.

But as I say try not to worry, it all gets less scarier the more informed you become.

And ask your Dr lots of questions, anything you can think of, but don't worry if you forget, just come on here and someone will always help you.

Anyway good luck and let us know how you get on

Jacqui x

[Vicky_b]

Frustratingly the Jak2 result wasn't back so I have to come back again in 4 weeks to get the results! More waiting 😢

[Roger41]

Hi, just remember the early days as you join this unique family of support every one is different.

However we are routing for you..

What ever the outcome take things easy, fine your own level, rest when circumstances allow and don't beat yourself up.

Already you are doing what is right for you.

We are more informed, because of this web site, try not to get entangled in the technical side as that is for your team to figure out.

Write everything down and take a friend with you.

My team said to me that our condition is manageable, it is not a death sentence it will be monitored.

The oldest survived has had their condition for forty years.

So be encouraged

[Vicky_b in reply to Roger41]

Thankyou for your kind words of wisdom. I will feel so much better when I actually know for sure what I am dealing with. The waiting is horrible. I don't want to read too much as I dont know 100% what I have, yet i do want to know what it might be! I think I am fairly young to be investigated at 44, most people seem to be much older when it starts.

Vicky