Hi, I was diagnosed with ET Jak2 just over a year ago, now looks like I have PV too.
My main concern is the extreme fatigue. I never feel refreshed even after a good nights sleep and some days it is so debilitating. I’m having to stop driving some days as it’s so bad, or I’ll be walking the dog and find myself having to just stop.
I’m finding this very frustrating, and even more so as my consultant keeps telling me it’s nothing to do with my diagnosis and just keeps referring me back to my GP. I’m already taking B12 and vit D supplements. It just feels like no one understands or wants to help.
Am also getting bone pain, it’s not daily but when I do suffer with it, it’s for 4/5 days at a time and nothing seems to help relive it… again I keep being told nothing to do with ET/PV.
Has anyone asked to be referred to a MPN specialist? TIA
Hi DottieBee and welcome to this corner of the Community……. I am Mike and I help out around our blood cancer groups.
I don't have Essential thrombocythaemia (ET) but I have been on my journey for over 25 years now…. Diagnosed with my first type of rare T-Cell NHL in 1999 at the age of 44. Then it’s buddy…. another rare type of (aggressive) T-Cell NHL appeared in late 2013……. 2 years of full on treatments followed……. then in Sep 2016 Remission and NED (No Evident Disease) was eventually confirmed so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Let’s look for the group members to pick up on your post.
Fatigue is a peculiar beast….. at times there are no answers…… it’s just how the body reacts.
I found keeping active definitely helped but still had/have times where my little body clock runs out…… but on the other hand the less I do the more fatigued I get resulting in muscle pain!!!!!…… for me, years out from treatment this is my new normal.
Do check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a few folks with ET in it so worth checking.
You may also want to check out MPN voice https://www.mpnvoice.org.uk/about-mpns/questions/essential-thrombocythaemia-et/ for some good information and have various support platforms.
Always around if you need further help or just want to talk.
Hi DottieBee.
sorry to hear this. I was diagnosed with ET / JAK2+ in 2016 just before my 46th birthday. I also started my menopause journey that year too!
I was put on aspirin only but over the years I noticed my fatigue increased & since I’ve been on immunotherapy injections (Feb 2025) I realised my fatigue increased. I was only working 3 days a week so I could manage this.
like you I have good days & bad days. I do reformer Pilates once a week, but even if I sleep for 7 hours, I’m still tired so I crave sugar throughout the day.
i stopped working in October 2025 as my job involved commuting more hours than expected but I’ve not been very active since which elevated my fatigue 
fatigue is one of the most common symptoms so I find that I need to rest when it’s bad. My worst time is at around 4pm / 4.30pm just as I need to start preparing dinner.
My medication changed in December to Pegasys injections & I had horrific insomnia / fatigue so my dosage has just been reduced (didn’t have issues with the alternative Besremi). I take my injections on Friday so I can rest up on Saturdays which really helps. I’m also having quarterly injections of b12.
I’ve also noticed bone pain too.
when I was diagnosed I was given this booklet & bone pain is listed as a symptom: media.leukaemiacare.org.uk/.../Essential-Thrombocythaemia-ET-Web-Version.pdf
unfortunately like you I was told keeping fit was the best, but when walking, I do have to stop frequently to sit down.
I joined the Essential Thrombocythaemia uk Facebook page as it’s useful but also look on MPN voice as they have lots of information. Sadly, most GPs don’t understand the condition enough.
You just have to take each day as it comes & listen to your body. Rest when you can & drink plenty of fluids.
I hope this helps you as I know what you’re going through.
