I am absolutely floored with fatigue … my platelets are still high & on hydroxycarbamide. I’ve never been an unwell sort & until now rarely saw my GP.
The haematolgy staff are completely dismissive of my fatigue - I sleep every afternoon for a few hours .. still sleep at night but just feel exhausted…
appreciate any guidance - comments Ty
Hi Inverclyde,
I am Sharon, one of the nurses on the Macmillan Cancer Support Line.
Fatigue is a common problem for people with essential thrombocythaemia. It sounds like the level of fatigue you are experiencing is completely disabling, it is no wonder it is getting you down.
I am sorry you feel that your hospital team are not taking this seriously, but we would always recommend requesting further medical review for worsening or persistent symptoms, as they know about your treatment and plan of care. They may want to recheck your bloods and review your medications.
You could request a referral to an occupational therapist or physiotherapist via your GP or consultant. They can help you to optimise your goals and energy levels.
Blood Cancer UK have tips on managing fatigue on their website. We have a booklet on coping with fatigue with tips around physical activity, nutrition, sleep and complementary therapies, and a fatigue diary, which can be useful for identifying patterns and things that make things better or worse.
Please don’t hesitate to call us if you want to talk things through with someone.
Take care,
Sharon,
Cancer Information Nurse Specialist
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.
Ref/ SA/GG
