Hello there @Connie15, welcome to the forum. I’m really glad you found it here as you’ll find many of us living well with Myeloproliferative neoplasms ('MPN') like Essential Thrombocythaemia ('ET'). Sounds like you were diagnosed in your early 20s so I’m really sorry you’ve already spent years with that diagnosis.
I’ll first share here the great Blood Cancer UK information about Essential Thrombocythaemia ('ET'), which includes various typical side effects and symptoms: Essential thrombocythaemia (ET) treatment and side effects | Blood Cancer UK
Although I’m not a doctor, I do live with one of the closely related types of Myeloproliferative neoplasms ('MPN') called Polycythaemia vera ('PV'). Here’s the Blood Cancer UK information about Myeloproliferative neoplasms ('MPN') for reference: Myeloproliferative neoplasms | Blood Cancer UK
Those changes you mentioned don’t sound like much fun, what have your specialists said? I always pass new or changing symptoms past my haematologist and keep note for myself. With these Myeloproliferative neoplasms ('MPN') we can have varying energy levels and new aches and pains, but I’d say we should always check them out with our doctors.
Would it help to talk over with the lovely Blood Cancer UK nurses like dear @Mike @GenesisDevice suggested? They’re specialists in all this and can advise on medical aspects. Their free number is 0808 2080 888.
Something else that might help with keeping track of symptoms from a chronic blood disorder like Essential Thrombocythaemia ('ET') is an app like this from MPNVoice: The My MPN Voice App – MPN Voice or this website: https://uk.mpn.your-symptom-questionnaire.com
If you’d like to find others around the forum who live with Essential Thrombocythaemia ('ET') just use the search box at the top and you’ll find threads like this friendly one: ET diagnosis finally sinking in
Do you have a Maggie’s near you? they’re really great for popping into, having a cup of tea, finding resources you might never thought of. I hear really great things about Maggie’s: https://www.maggies.org
Hope that helps settle you in a little @Connie15, do keep looking around the forum and you’ll find lots of great info and get to know others.