Hi everyone
I’ve had muscle pain for many years now. Now I’ve been diagnosed with Essential thrombocythemia (ET) I’m wondering if this could be the cause. Now meds I’m in is Asprin until next year when they want to put me on hydro which I have to say I’m not happy about.
I don’t really want to ask the doctor about the aches as I know if they think having Essential thrombocythemia (ET) is the cause they will want me on hydro sooner.
Longer I keep off it the longer I don’t have to think I’m taking chemo or having the dressed C!
Guess I’m having a bad day.
But the sun is shining!!
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Hi @Happy2019 We are here for good or bad days.
It is up do you but very personally I am thinking about 2 different aspects.
Firstly I do tell my medical team of all my symptoms so as they know what is going on for me and they might even be able to suggest something.
Secondly if something is nagging at me and probably painful and debilitating personally I would want to find the cause and hopefully something to alleviate it.
However it is absolutely up to you and it is alright to have a bad day even though the sun is shining, but the positive thing is that you have posted on here.
Be ever so kind to yourself and really look after yourself and keep posting
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Hello there @Happy2019, I’m sorry to read of that muscle pain you’ve experienced. For years! That can’t be any fun.
Have to say, much like @Erica, I’d tell my doctor these days if I had any discomfort or pain, whether it’s related to Essential thrombocythemia (ET) or not. Life is too short to tolerate daily aches and pains! Unfortunately we can live with separate illnesses and experience symptoms from them all at once.
As I live with Polycythaemia vera (PV) I thought I’d check if muscle pain is more of an Essential thrombocythemia (ET) side effect, but this great Blood Cancer UK information doesn’t mention those aches you tolerate: Symptoms of essential thrombocythaemia (ET) | Blood Cancer UK
As muscle pain isn’t listed as a typical side effect of Essential thrombocythemia (ET) I’d want to tell my doctors about those aches just to check what might be causing them. Maybe you could pass it by your GP first?
Do please let us know what you find out @Happy2019, and don’t live in pain for fear of it leading to being prescribed hydroxyurea or similar. Cytoreductive medicines like hydroxyurea have decades of research behind them, hence why they continue to be prescribed for these pesky Myeloproliferative neoplasms (MPN) we have!
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@Erica
I’m normally very good with things and I know I should tell my consultant and I will next time I see them if this continues.
Just Clearly having a bad day.
@Duncan when I see them I will and keep you updated.
I really I hope I get a choice of meds next year as I really don’t fancy hydro
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