Hi everyone
After a nightmare the last few weeks starting with a blood clot in my little toe several tests and visits to hospital just been diagnosed with essential thrombocythaemia (Essential thrombocythemia (ET)) certainly wasn’t expecting that heads been all over this last week started on 500mg hydroxycarbamide and back to haematologist on 30 December just reaching out for some information on this disease as really didn’t even know it existed I have been tired and I ache in my legs and arms mostly just wondering if this is common thanks 
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Hi @Joanne1970 I am so glad that you have found us, yes, the last few weeks must have been a nightmare for you.
I have another condition, but what I do relate to are your feelings of your head being all over the place. I feel my thoughts and emotions have been all over the place since I was diagnosed. They are often not logical and can conflict with each other.
You ask for information so I will copy you the details from the Blood Cancer UK website on Essential thrombocythemia (ET) which I hope will answer your questions
[Essential thrombocythaemia | Blood Cancer UK (Essential thrombocythaemia | Blood Cancer UK)
I reckon it is also a weird time of year ( I was diagnosed at the same time of year) and felt in a bubble with the holiday period going on around me,
Now is your opportunity to write down your fears, questions and practicalities for your appointment on the 30 Dec
Be very kind to yourself and ask for medical speak to be put into plain English and please do let us know how you get on and the Blood Cancer UK support line is there for you on 0808 2080 888
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Thank you @Erica for your response I will have a read and right down my questions I have for my next visit and try make some sense of all this
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Hello there @Joanne1970, welcome to the forum. I’m so sorry to read of that clot you experienced and the diagnosis with Essential thrombocythemia (ET). I bet you weren’t expecting all that! I had a similar experience last year with being diagnosed with a related Myeloproliferative neoplasms (MPN) to yours called Polycythaemia vera (PV). Isn’t it a lot to take in?!
Sadly, cancer-related fatigue is so common with cancers like Myeloproliferative neoplasms (MPN) that it has its own little acronym of CRF. Most of us with these sorts of diagnoses will experience fatigue, unfortunately. I went from no symptoms prior to diagnosis to terrible fatigue after being diagnosed with Polycythaemia vera (PV) and starting hydroxycarbamide, but over a few months the fatigue faded. Still get a bout now and then, usually when very stressed and/or overdoing things physically.
There’s a couple of things that I think helped me improve my energy which I based on some research I read about how to deal with CRF. The main one is to get into a regular sleep routine and waking time so you can get daylight into your eyes every morning which helps regulate our circadian rhythm. Sounds a bit kooky but it’s scientifically proven.
Another way to increase energy is to do any kind of exercise, and when our bodies are too fatigued or achy for getting out walking or anything more strenuous we can still try some slow stuff like yoga, tai chi or Pilates. Yoga really helps me personally and I do it in front of the telly so no busy sweaty yoga classes for me!
Oh and the one thing that always seems to help me when fatigue kicks in is to rest whatever I was doing and to resume it later. Pushing through fatigue just seems to make it worse in my experience so resting and then resuming it is!
Honestly, after getting back into yoga I’m now fitter and bendier than prior to diagnosis. I also love walking which might not be so appealing in winter, like cycling, but I suppose there are always gyms with treadmills or home gyms.
Here’s the great Blood Cancer UK information about the Myeloproliferative neoplasms (MPN) family of blood cancers, which Essential thrombocythemia (ET) is a type of: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Here’s their information about fatigue: Fatigue | Blood Cancer UK
Let us know how you get on @Joanne1970 and what you find helps that dratted fatigue!
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Hi @Duncan thanks for your message I am back at my haematologist on 30/12 so will be asking lots of questions as think I was just in shock last week so didn’t really ask anything. Needed this time to sink in really am struggling with the fatigue and now come down with a cold and sore throat but as soon as feeling a little better will definitely be getting out for walks and maybe I’ll try a yoga class
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Hello again @Joanne1970, it’s my pleasure to offer any support, especially at this early stage after diagnosis. I remember it well!
Sorry to hear you’ve come down with a lurgy, although perhaps to be expected after such a big shock at this time of year? I’d say take it easy and make sure to lean on loved ones right now. Shock can be a bit like grief, coming and going, but I like to remind myself that there’s always a new day just one sleep away.
I’d say, in regards to feeling like you didn’t ask enough of your haematologist, keep notes of changes and any new physical stuff. Being able to share these with your haematologist will help them keep your treatment specific to you and any symptoms you experience.
Bet doing some yoga will be great if you fancy it. Hope it goes well with your haematologist next week and do please let us know how you get on @Joanne1970.
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Hi @Joanne1970
From the mouth of my haematologist “it’s a good one”! I won’t say what my reply was!
I was diagnosed in Feb this year and currently on aspirin. I see my consultant every 3 months for a chat to see how I am etc. have to say they have been very good and I’ve found that no question is a silly question. I’ve also done a fair bit of research myself.
We’re all part of a “club” we really don’t want to be in but everyone here is amazing.
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Hi @Joanne1970 - I want to say welcome to the club but I expect you, like the rest of us, would rather not be in it at all!!
I was diagnosed with Essential thrombocythemia (ET) and Chronic lymphocytic leukaemia (CLL) this spring and before diagnosis my head was all over the place, but this seemed to settle once I had actually had the diagnosis. The extreme fatigue took about 4 months of being on treatment ( pegasys) before it lessened. I now can lead an almost normal life just with afternoon sit downs. I agree with @Duncan and don’t try to push through tiredness- take a break , it’s really important to rest when tired. Exercise when you have the energy to. Hope this helps
Gillyj
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Oh goodness @Happy2019, I think I may have had some strong words too if my haematologist said that! I mean, none of these horrible disorders are plain-sailing, but some of us drift through more unscathed than others. I’m glad you’re here to empathise with.
And @Gillyj I’m so glad you’re able to live a more normal life again. Even having the energy to play with grandkids is something I bet you don’t take for granted. I certainly appreciate many activities I never thought could be so tricky, like simply getting up off the sofa or thinking through a plan to completion.
Here’s to less fatigue and more simple pleasures!
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@Duncan
Oh he got told alright!!! I didn’t hold back!!!
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Ha ha ha I would have loved to see that @Happy2019! How flippant of him to speak like that!!! Hopefully no one else will hear that nonsense from him now, thanks to you 
He’s no longer there thank god! If he had the same bedside manner wi the his other patients as he had with me I wouldn’t be surprised if someone didn’t deck him! If I hadn’t been in so much shock and upset I probably would have!!!
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Hi everyone,
I’m Joanne and was diagnosed with Essential thrombocythemia (ET) in April this year. I’m 47, currently off work after a very complicated few months of migraines, drug interactions, an adverse reaction to dermatology immunotherapy and then the Essential thrombocythemia (ET) diagnosis.
I already live with a few chronic conditions which affect my day to day capacity and quality of life; chronic migraines, menopause, chronic fatigue syndrome and year round eczema, asthma, hay fever, allergic conjunctivitis, so the Essential thrombocythemia (ET) on top of all this has knocked the wind out of me. The constant tinnitus and headaches make me feel very fatigued, in fact I would go as far as to say I’m quite vague sometimes.
I have about 2 reasonable feeling days per week. I was managing to hold down a part time job for 3 days a week, until my health deteriorated so much last year I have been off sick since November. I really hope to go back, as I miss the sense of purpose and a lovely team of colleagues, but I have a family and I’m worried about having the health and energy to return to work and to be reliable, and maintain my concentration / not make stupid mistakes, etc, as well as having the capacity to look after my family. My husband is very supportive and helps as much as he can, but has a very demanding job, so I do need to prioritise having capacity for the Mum-taxi runs, keeping laundry and sports kits ticking over, etc.
Is anyone else on here juggling multiple chronic conditions and of working age? How do you cope? Are you able to work?
Thank you for ‘listening’. 
Joanne
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Hey Joanne, I was also recently diagnosed with Essential thrombocythemia (ET). I’m 27, and yet to start any treatment pending a meeting with my haematologist so it’s all very fresh but also deal with some other chronic conditions - hyperhidrosis and migraines.
I have a pretty relaxed job in the civil service where I largely my work from home; work are super supportive which is helpful, as is my partner, but she works an insanely demanding job in medicine that’s heavily stress-inducing and I’m trying my best not to worry her.
I’m really affected by the fatigue and by the mental side of things. My platelet count is nearly 2m per microlitre which is quite advanced even beyond the threshold for a high platelet count.
The tinnitus and headaches get me a lot too! I find myself having to lie down a lot but it’s really hard restraining myself as I’m used to being really active.
I find myself constantly thinking whenever I feel a bit warm in the head, or get a headache, that my time has come 
It’s hard to manage because at my age there’s very little research. The evidence seems mostly aimed at those in the >60 range which makes it difficult to see what the realistic impacts are on an otherwise healthy young adult.
Sorry, rambling quite a lot here; not sure how to talk about it in a focussed way yet!
How are work treating your diagnosis and the impacts on your absence; and how are you dealing with the psychological impacts?
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Hi
I’m 6months in now and with the medication hydroxycarbamide which I take daily all my levels seem to be good my platelets are down to 342 I have been visiting my haematologist every 4 weeks but have now been put to 8 weeks generally health wise everything seems to have settled down not even that much fatigue at the moment obviously I suffer terribly with anxiety now 
just with the worry of it potentially progressing into something more sinister but I just have to keep positive. My work have been amazing I am a full time housekeeper for a private family so appointments have not been a issue and at the beginning they said if your feeling tired go have a lie down which I never have but they have been great x
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Hello Koifish,
Thank you for replying, you weren’t rambling at all - the diagnosis and living with this condition provokes all sorts of thoughts and challenging symptoms.
I’m also very lucky with a kind and supportive employer, but I have personally struggled with it psychologically because I hate the thought of being off sick and letting the team down, and for so long too.
But, I have accepted my circumstances and take one day at time at the moment. There’s no point fighting it. A counsellor once taught me value of acceptance and I’m trying to apply it to this, but don’t always succeed hence my post on here last week!
The migraines last a few days each so since this Essential thrombocythemia (ET) diagnosis I’ve worried about not moving around enough, let alone the fact I’ve had a desk job all my life and never been very sporty due to severe childhood asthma - I didn’t developa positive association with sport. Although I’ve always enjoyed walking.
I’ve taken up yoga snd walk the dogs when not in migraine, and did the York Lab test to identify any allergies which may cause inflammation for me. I have cut yeast, gluten, and processed sugar out of my diet. And potter around the house and garden, do a bit, rest a bit, do next thing, rest a bit, etc. Everything I manage to do is a little win - even the morning shower - I mentally tick off each as an achievement, registering the little wins really helps psychologically.
Thankfully, the neurologist I saw last Friday was very understanding - I’m waiting for a new prescription of Antogepant which I hear is very effective with minimal side effects.
I worry about my ability to concentrate and this affecting me when I try to return to work - hopefully if the Antogepant helps some I’ll start to improve and get some confidence back to bolster me on a phased return to work. This is very much my hope - I hold onto hope a lot too!
I have a MRI brain scan next week, ordered by the neurologist, so that’s my next medical milestone.
Admittedly I get a bit anxious waiting for results, and I suspect I’ll be this way with the next round of blood tests, wondering if the Essential thrombocythemia (ET) has progressed, but maybe I’ll get used to it? How do you cope with waiting for test results?
Take care, bye for now 