Hi. I was only diagnosed 4 weeks ago but I’m struggling quite a bit with the fatigue I feel most days. I’ve always had a very busy life and been on the go I’m only working one day a week now as a forensic nurse examiner but I’m pretty wiped out the day after my shift I went to aqua fit this morning trying to do some exercise which is a bit less energetic than what I have been used to but ended up falling asleep on the garden sofa I was so tired Do all Chronic lymphocytic leukaemia (CLL) patients feel this way and any top tips to manage constant exhaustion whilst living a normal life ?
Hi @KayC Fatigue appears to be a common symptom with many blood cancers.
The Blood Cancer UK website has a lot of information on it.
Fatigue is my main symptom that affects me on a daily basis.
I also have Chronic lymphocytic leukaemia (CLL), and I have had it for 18 yrs, on watch and wait, which means you live with the symptoms you were diagnosed with.
When I was newly diagnosed and over the first 5 yrs I worked full time and just worked, slept and ran a home.
However over the years I have got to know myself and how I tick, what is important to me and who I want to do it with.
I realise that since diagnosis I do not deal with what personally stresses me well and that wears me out and fatigues me.
My fatigue can be set off when I overdo it emotionally, physically or practically.
It can come on immediately or up to 48hrs later.
I am a girl for an hours nap in the afternoon sometimes, sometimes I need to duvet dive but sometimes I really find fresh air and appropriate for me exercise. I am a walker, which is great if you are nosey like me and I appreciate nature more now.
I try to get a good nights sleep by going to bed and getting up at similar times each night.
Personally I am now a ‘lady that lunches’ and don’t do evenings which seems to work well with my friends.
My energy wains in the evenings.
Finally I want to say yes, I have made adjustments to my lifestyle but for me life is good today.
Others might have other thoughts and I look forward to hearing them.
If you feel you need some medical or emotional support to help with your fatigue please do ask for help.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
Be very kind to yourself you are probably still in shock because you were only diagnosed 4 weeks ago.
Look after yourself and I look forward to hearing more about you.
Thanks that is really helpful to get advice from someone who has had many more years than me of living with Chronic lymphocytic leukaemia (CLL) and learned over time what the fatigue triggers are and how to adjust. You are right I am in the early stages of acceptance and associated frustration of accepting I can’t do everything I used to do without paying the price. I will get there
Hi @KayC you sure will get there I can tell and we are here to support you, give yourself time I was in shock for ages and looking at the behaviours of others and not my own and you certainly cannot control what others do.
Be kind to yourself
Hi @KayC . Fatigue and exhaustion goes with the territory . Just sleep when you need .
As your treatment stabilises , you might (like me) find the fatigue less so . I used to have to rush to bed at 1pm in the afternoon but I no longer need that . I get up about 5:00 am (Have done since a child ) but i am in bed by 7pm (since illness) .
I get tired talking , so I have cut down phone conversations and just text .
It’s lovely that you are keep up with fitness regime , you might need to just reduce the attendance a bit - but keep it up .
Thanks for that. Really helpful to hear about experience of others. Early days for me I’m sure I will work out how to adapt as the weeks go on
Thank you for sharing this, and I hope you’re doing okay. We do appreciate that fatigue can be a very difficult symptom to manage, and others have already given you excellent advice- you’re certainly not alone in how you’re feeling. It’s understandable to feel frustration around not being able to do what you used to do and it certainly takes time to adjust. In case it’s useful at all, I thought I’d share our webpages around fatigue that Erica mentioned- Blood cancer and fatigue. As has been mentioned you are of course very welcome to call us if it’d be helpful to talk anything over at all (Blood cancer UK Support for you).
Thank you and I will definitely read this
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 8 years ago and am about to start my first treatment, so have spent 8 years happily ignoring my Chronic lymphocytic leukaemia (CLL)! When I first went to the doctor, thinking I’d picked up a tropical bug whilst travelling, fatigue and bone aches were the trigger for me to seek attention. However, the fatigue I had until a couple of months ago was nothing compared to what I suffer now.
I think I managed with the lighter fatigue by ignoring it! I am a very determined and stubborn woman and I vowed not to let Chronic lymphocytic leukaemia (CLL) change anything about how I lived my life and it worked!
Of course, as my bloods deteriorated more recently, the excessive bruising and proper fatigue (as opposed to feeling a little tired) hit me hard. I am hoping the treatment will get rid of these symptoms. So, unless your Chronic lymphocytic leukaemia (CLL) is already advanced, I’d suggest cracking on with doing as much as you can, as the really bad fatigue is the time to worry!
So sorry to hear that after 8 years your Chronic lymphocytic leukaemia (CLL) is becoming more symptomatic. I am newly diagnosed just 4 weeks ago on watch and wait and will take your advice !
Hi, I was diagnosed in 2013 with Chronic lymphocytic leukaemia (CLL) and started treatment in 2017. I had never suffered from fatigue apart from when I was receiving chemotherapy and now since I contracted COVID. Did you fatigue start prior to diagnosis or following it. If it was a symptom prior to the diagnosis then have a look at you haemoglobin to see where it falls in the normal range or not, less red cells less oxygen = more fatigue, plus a few other factors that add to it. Also with a recent diagnosis you will likely be going through self grieving and also mild or even a severe depression. Talking about it like you are doing is a great help, but get help, I didn’t and my diagnosis depression lasted 3 months and was horrible. Your fatigue could well be a symptom of depression as much as a physiological one due to the Chronic lymphocytic leukaemia (CLL), so if you are feeling depressed then get help it could help with your fatigue. If it is the Chronic lymphocytic leukaemia (CLL) causing it then rest when your body tells you to do so, and tell people that you may need a bit more help, some understanding when you have to rest and can’t be at that event, do those tasks, or even raise that smile which you normally would have done.
Thanks for this. Even though I’m newly diagnosed I suspect I have probably had Chronic lymphocytic leukaemia (CLL) for 2-3 years. Each time I had my bloods taken during that time ( I had bad skin and bruising reactions to my covid vaccines ) my lymphocytes were raised but no one put it together until now. So the fatigue has crept up on me. I’m not anaemic my HB is that of an average healthy male and I don’t think I’m depressed although I still have the odd moment of shock and anger that this has happened at a time of my life when I am nearing full retirement and we were looking forward to more holidays I feel frustrated more than anything and guess I just need to slow down a bit. Hope you are ok