PV Hangover!: Morning! Does anyone else wake up... - MPN Voice

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PV Hangover!

noodles26 profile image
13 Replies

Morning!

Does anyone else wake up and feel hungover?I haven't touched a drop of alcohol and yet feel like i've had one too many cosmo's! I've been on interferon for a month now and I am just fed up of the side effects!I'm 26 and feel like i've aged 10 years within the last month!! I'm realy struggling with the side effects now! The worst has to be the pain from my right hip down to my foot, it literally hurts to sit/lie down etc! Just feel like my haemotologist consultant isn't bothered! Please someone cheer me up and help me find the light at the end of the tunnel!x

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noodles26
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13 Replies
Swede profile image
Swede

Hi noodles 26!

I have E.T since 2007 but I have the same feelings.It started with physiotherapy for my hip that was very very painful.The therapy just made it hurt more so I stopped.

I do wake up feeling hung over but without the fun of having had a good night before!

Also, I used to say I have aged 10years nearly over night.That is how I feel and also how I think I look.

So, what positive vibes can I give you?

It is hard work to be ill.I used to say one must be fit and healthy to be ill.

But...I do most things I want to.We travel as much as we can, trying not to let it stop me from enjoying things.I now also explain to people why I am cold all the time, why I avoid people with colds etcetera., and I find that they understand better.

So, try to do what you want.Try to not let it grab your 'depressing-thoughts'.(I know it is hard...)

:-)

noodles26 profile image
noodles26

It's strange how one day you can feel great then later on your body decides to ache and make you feel depressed!I'm off back to the hospital today to discuss my side effects so hopefully the doctor can shed some light ! Yep I have also informed my friends that somedays I just don't feel like meeting them due to the aches, they're an understanding bunch! I think once I get back into a routine I should start seeing my mood improve :) thanks for the reply!good to know i'm not alone!xx

rubyrubyruby profile image
rubyrubyruby

I have ET and I am under 40 (just!). I definitely have days when I feel much older than I actually am. I can't keep up with the hectic lives of my friends and I have to schedule into my daily routine sofa time. I am fortunate I don't have to work but I honestly don't think I could even if I had to, due to the fatigue I suffer most days.

I also have days when I wake up and feel in a haze all day. Yesterday by 7pm I was done for. My body ached and I was sooooo tired and I had fallen asleep on the sofa by 8.30!

You are not alone but I do feel this feeling is harder to deal with the younger you are. If I was in my 60s/70s and felt like I do I wouldn't necessarily feel I was a lot different to any others of my age. However, having to give myself daily rest time and knowing that a late night will mean I need to write off the next couple of days is much harder to cope when you are younger.

Hope this helps

noodles26 profile image
noodles26

I don't think I could manage a night out now!On the plus side, I am saving money not going out haha!I would just rather a night on the sofa with a film :) I am going back to work next week...lets see how that works out!haha xx

Speedy1319 profile image
Speedy1319

I feel the same as you guys. My experience has been similar! :-)

Yes, me too. I was at my GP one day who was a registrar and she was intrigued by my illness which she hadn't heard of. She said she would read up on it before my next appointment. I told her about this website because I think that way she is hearing straight from the horses' mouths, if you'll pardon the expression the sometimes debilitating effects the disorders have on our day to day life. I also gave her MPD Voice website. You guessed it, she looked into MPD voice and not our patient's forum and read the description given along with the MacMillan Cancer Support point of view that it does not have a lot of impact on our lives and they don't seem to listen to the patients when they are describing the impact on their lives. I think she came away with the opinion that I should be just getting on with it -0f which of course we all are, but I must say I don't think MacMillan Cancer Support is the best source of updated information any more as they still do not consider it a cancer and it tends to make you feel more inadequate when you can't come up to the standard they think you should be achieving. If only the doctors would listen to the patients! - and Ruby - I agree with you.

Nickyb57 profile image
Nickyb57

That's not good! I have PV and take hydroxycarbamide, it works wonderfully. I tend to feel under par when my hematocrit goes above about 38 and also when I fail to drink at least 2 litres of water a day. If you are unhappy with your haematologist ask for a second opinion, if you're in the UK maybe go to St Thomas's in London.

noodles26 profile image
noodles26

Hi Nickyb57, I can start taking hydroxycarbamide when my liver goes back to normal!it's really swollen at the moment causing my body to look distorted haha!be happier when i can start on that!

Nickyb57 profile image
Nickyb57 in reply tonoodles26

Hi Noodles, How's your spleen?

noodles26 profile image
noodles26

that's slowly going down in size!i think it was enlarged for a long time and i just thought ihad gained a lot of weight!

Aime profile image
Aime

Hi noodles26, If I go back to sleep after waking up in the morning I feel like I have a hangover which continues all day. I very seldom drink, if I do, I don't feel great even after one small glass of wine. I am on antihistamines but no other meds apart from asprin. My right hip has been bothering me and I was told after an mri that my muscles and bursa are inflamed and will eventually sort itself. I find hydro pilates works for my joints but I have to put up with the itching because of the warm water! Regards Aime

MAP44 profile image
MAP44

I definitely think the liver problem and hip pain are related. Same side of body and all.

I have been on pegasys for almost a year and was very tired in the morning ( hang over feeling the day after injection) or found the in the middle of the week I had insomnia. It does sort itself out and once it began reducing the blood counts I started to feel much better and the side effects disappeared. Hope you feel better soon. 😎

MAP44 profile image
MAP44

I also think most younger people would trade their HU for pegasys or Besremi if they could. Give your body time to adjust and find a new normal. It took some time for the medicine to kick in. Pegasys works best when you drink lots of water all day and inject in the evening so the side effects wear off by morning. 🍻

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