I've come to the conclusion that the majority of the public don't understand what fatigue means and they think we are a bit tired when we mention that word.
I sympathise again with all of you who have posted with fatigue - I'm looking forward to my venesection this a Friday as I have arms and legs made of lead and a brain full of porridge. I've been drinking plenty (and running to the loo plenty), forced myself out for a short walk but began to wonder if I was going to make it back to the house, but I did but don't feel any better. I have said some really stupid things and my husbands given up telling jokes as it takes me an hour to get them! No seriously, my brain is so fogged up it's unreal!
I'm now sitting/lying in a heap on the couch, even typing this post or watching tv is such an effort. Roll on Friday.
Best wishes to all, hope you are all feeling the best you can be. Kindest regards Aime xx😺😺
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You are saying just exactly how I feel just now.,struggling with fatigue (it should have another name) brain not working,forgetting words.,wondering what consultant will come up with now,will not be venesection as have a stent and told it is not an option......months now since HC T & H G reduced ,platelets lower than normal......interested you cannot be bothered with T V ,me neither,cannot 'keep up'...was a bit relieved that I am not alone,hope all goes well at Guys and you soon are better Aime,Very best wishes,e-hugs and all that can help this ghastly feeling.Sally
Thank you Sally, it does help when you know you're not alone but sorry you are feeling so crap too. I think earlier on with the fatigue, exercise and plenty of fluids do help but I get to the stage like this week when my body says enough and I have to give in.
I'm really sorry to hear you are feeling so tired - it's horrible and totally affects your life - it's not akways easy to stay positive when even little every day tasks seem so hard.
I know from your posts you are such an upbeat and positive lady and I hope you will soon start feeling better when you have had your venesection .
You were so kind to me when I joined the forum after my diagnosis of PV in November and I hope that I can now repay your kindness with positive wishes for you . I think we are all entitled to feel a bit fed up now and again - we are only human after all - "super special " humans as my better half says ! Lol
Any way I really hope that you are soon feeling better Aimee
We all are here for one another which is great as you say we all need support at times. I like the kick ass thoughts and "super special" humans, not been called that before but I think everyone on this forum should be allowed to put those words after their names!! I'm laughing now, thank you, kindest regards Aime (and away to kick ass)!xx😺😺😺
Thank you Aime,like you I drink plenty of water,good diet etc,exercise normally,but just now I feel like giving in....wish we could get answers to why we are so up and down,I blame my high dose of H U,I am just now,worse than have felt since the start of P V 7 yrs ago. Going to get off the bed now and toddle out ,but know will be clattered again in a short time! Will follow how you get on and X fingers for you. Sun streaming thru window ,all greening up here,wish my sap would rise!!!!!X Sally
Thank you James, I usually do feel a lot better after a couple of days so fingers crossed. Hope you feel good for as long as possible. Kindest regards Aime xx😺😺
I know exactly how you feel. I walked for one hour twenty minutes yesterday, all flat no hills. When I was nearly home I was aware I was getting slower and slower and my legs felt like lead! I was shattered for the rest of the day. I had a venesection 4 weeks ago and I don't think it makes any difference whether I am due one or not.. I'm sat here now, watching tv and would so like to shut my eyes for 10 minutes but know I won't sleep well tonight if I do.
I have my grandson to sleep for 2 nights in Thursday so need to get some energy from somewhere!?
Hi Judy , thank you and I hope you get energy for the grandchildren. I couldn't do without mine but you do need a bit of oomph to cope with them. Kindest regards Aime xx😺😺
Hi Aime, I do suffer from the fatigue, but not to the extent that you describe. Although, when not at work I often succumb to a nap in the afternoon. It must be truly miserable for you. Hope the venesection does the job for you.
I would also like to say what a great contributor you are to this forum, giving great advice in an empathetic manner, so anything that clears that 'porridge head' has to be a good thing😁
Hi Mary, thank you for your support and kind words. Everyone helps everyone on the forum and it's so great that we do support one another as we truly understand what someone else is going through.
Hi Aime, I wish there was something to give us some energy, I get fed up feeling so slow. I also have bad arthritis in my knees so walk slowly anyway. And brain fog .............. I don't seem to have any concentration especially since being on Anagrelide. I used to read a lot and now I can't seem to take in what I am reading.
I know there are people who are a lot worse than us and we shouldn't complain - but we do!! Some days I feel such an old lady (some days one peers back out at me from the mirror!)
Thanks Lizzie, I know what you mean about the old woman - feel about 90 today but going to kick ass, will drive to hairdressers (I usually walk) get all the grey hairs covered up and that will help.xx
Arthritis is a nasty, hope you get some relief from that too. Kindest regards Aime xx😺😺
I'm so sorry that you are feeling rotten. You were such a help to me when I was feeling overwhelmed and at my worst last year. I wish that there was something that I could do for you. I understand the feelings of fatigue, but I'm not sure that those of us not on HU do. If you look up fatigue in the dictionary, it doesn't begin to describe this total lack of energy and depression, which comes from not feeling capable of doing the things that came naturally before medication.
I pray that you will feel better after your venesection and a little more like your old self again.
Not long to go now! I hope you feel better in a few days. Well done for still heading out for a walk even though it was probably the last thing you wanted to do. I've started drinking so much to keep hydrated that I can't go on long walks now due to the lack of public conveniences around here ;-)!! Thank goodness for treadmills, lol.
Hi Skyehope, every sympathy with the lack of loos! I find when I'm working I don't drink enough fluid because loos are not available in some of the back of beyond places I end up. When I'm at home I've got my routes carefully planned!!
As I say tomorrow is V day so by Monday I should be starting to feel better. Thank you for your support, kindest regards Aime xx😺😺
Yes I too have one on the 24th and can't wait either. My head also gets very warm neat the time so I know I need some out. I also hopefully will have the results of my CT scan this week which might help understand why I'm Jak2 negative.
I try to explain the condition to people sometimes but they just say oh hemocromatosis and lose interest. I don't bother explaining the difference anymore. Good luck on Friday x☺
Thank you Nozboz, I'm feeling a bit better today so hopefully that will be me a bit more energised for a couple of months. Hope your venesection goes well and you feel better soon.
I'm jak2 negative too and my CT was clear and I was told my condition was due to the mutation of another gene - trust me. PV is rare enough but I think it is only about 5% of sufferers who are Jak 2 negative. We must be special people!! That's what to tell those who lose interest!! Kindest regards Aime xx😺😺
Jak2 negative only effects one in a million people Aime and this was confirmed to me on my last visit at kings College who are great by the way. Just need to buy the one in a million tee shirt now xx
Hi Nozboz, it's sounds good being one in a million but unfortunately not for good reasons! But I agree about the T shirt, looking out for one now!! XxAime 😺😺
Hi Richard, I've been shattered at the weekend but picking up today with a bit more energy so I'm heading the right direction. Hope you're well too. Kindest regards Aime x😺😺
I can't believe it's taken me 10 months to find this forum since being diagnosed with PolyNoJak. Many thanks for your post Aime, sadly it's great to see that there are others with the same condition and symptoms that I can not only sympathise with but also totally relate to. Up until today I have been in a lot of denial over my/our condition as, probably due to the rarity, hardly anyone understands. Had my bi weekly leech session yesterday (venesection), although the vampire nurses at our local hospital are great, I nearly walked out after 4 stabs in both arms.
I hope your treatment controls your levels back to normal.
HiDaveEe, so glad you have found us all in this forum. As you will have seen everyone is so friendly and helpful, coming onto this forum was the best thing I ever did. All posts are monitored by Maz and her team. The MPN Voice website is worth a visit too. You can rest assured that all the information on there is trustworthy.
Maz can also give you answers to medical questions which helps greatly too if you are anxious or don't understand something relating to your treatment. Keep in touch with the forum because everyone really understands exactly what you are going through. Kindest regards Aime xx😺😺
Hi, I'm new here. I'm 57, Jak2 positive PV which was diagnosed July 2016. Can't say I've felt brilliant for around 18 months. My iron is extremely low, (after around a dozen venisections taken in the 1st 3 months of diagnosis). My platelets are just under 600 and my haemacrotic is fine currently but I'm off work with fatigue and the symptoms you say you're facing. I also suffer from sweats that don't stick to nighttime and burning/tingling feet. I have elbows that feel bruised and sore but my consultant doesn't feel that it's related. I feel this condition is ageing me. Does it ever improve? Joyce
Hi Joyce, big welcome to the forum where you will get loads of support from folks you’ll come to look upon as friends who really do understand what you’re going through.
It is difficult to cope with low iron I know, as this makes you even more fatigued. I can’t say that PV gets better because it is a chronic condition but it becomes so much easier to live with once you get it under control and you are monitored on a regular basis. You get to the stage that it’s not the first thing you think about when you waken up and by increasing your knowledge and also by finding ways to help your emotions, you will cope so much better, honest! If your iron is too low, it may be worth asking your haematologists advice. I was given a 2 week course of iron once after a venesection was done when it shouldn’t have been!
Drink plenty of fluids, water in the main. Eat as healthy as you can, exercise as and when you can. Even a short walk to have a coffee with a friend can make a huge difference to how you’re feeling. Your thoughts are connected to your emotions, so happier thoughts make you feel better. If I’m down, I look at pictures of my grandsons and they never fail to make me smile, then I feel better. Google “moodgym “ too as this helped me.
All the symptoms you mentioned I’ve experienced with my PV, so have many others on this forum. Keep in touch via this forum and have a look at the MPN Voice website, where you can find trustworthy information. Above all, keep in touch on this forum, where lots of fellow sufferers will support you.
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