Hi All, I was diagnosed, finally with Chronic Lymphocytic Leukaemia at the end of summer this year, although I have been living with low platelet count for some time. I am exhausted perpetually, and sometimes it is that bad that I struggle to move legs and arms. I rang Macmillan, and asked if I would have to live like this for ever, and I was not given an answer. The nurse suggested that I might be given steroids at some point, but as I pointed out, and she agreed, they would only provide temporary relief. I struggle to look after myself and the house that I live in. Will this situation carry on for ever? I am 78 years old and have osteo arthritis and three lung diseases.
2 Likes
Hi @gerryriley and welcome to the forum.
It must be very frustrating feeling so fatigued. There have been quite a few posts about this recently. It really makes you realise the impact it can have on your everyday life.
I hope there will be others who can share their experiences with you so that you don’t feel so alone. They may also have some things that have worked for them. Have you got people around who can help and support when you need it?
I have copied the link to information on blood cancer and fatigue.
I’m glad you’ve found the forum. It’s a really supportive place to be.
Take good care of yourself and keep us updated on how you are doing.
Nichola x
3 Likes
Hi @gerryriley
Welcome to the forum
I’m also a recently diagnosed Chronic lymphocytic leukaemia (CLL) patient. I got my diagnosis in late March this year, so I feel I can relate to your circumstance to some degree.
My personal experience has been one that has included fatigue, albeit, with respect, we are different ages and you mention other conditions you have, that I do not.
Personally I find myself dropping off for a ‘power nap’ most afternoons, if only for 30 minutes or so. To be fair I don’t keep the best sleep pattern as I care for my wife who has arthritis in both of her knees, so she experiences a lot of pain, and often wakes during the night and needs my help.
As for your question regarding the situation carrying on forever, that’s probably a question for your medical experts, as although we have the same condition, we are all different, so I guess we will have our own experiences.
I note that @Nichola75 has shared the a link regarding blood cancer fatigue, so do feel free to take a look at this if you haven’t already. I hope you find it helpful.
I can echo @Nichola75 comment regarding the forum as it is a very really supportive place.
I hope to hear back from you as we (and others) tackle our condition(s).
Take good care
Mike.
4 Likes
Thanks Mike I appreciate your kind response. I have a telephone appointment with my consultant early in December, and I will raise this subject with him then (together with other matters), and I will report his response. I’ve had a low platelet count since 2023, so I’m beginning to think that I will never be free from fatigue. But hey ho - we’ll see. Thanks again.
4 Likes
Dear all, recently married with 2 kids 4 years and 2 years, i am have been diagnosed Chronic lymphocytic leukaemia (CLL) just after my 4 years daughter , i am also living with 24/7 fatigued and body pain, life is horrible in last couple Of years, no painkillers are effecting on me, my brain is always foggy, i cannot perform simple task for me or my household, i habe background of working with business and law firm, but i am cannot do any thing, if anyone have similar experience please jepp in touch with me, so we can figure this out how to deal with these
Many thanks for reading my post
1 Like