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 .
Hi @KayC,
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).
Best wishes,
Tanya.
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
Does anyone understand why the fatigue comes and goes? I know it’s not my meds as I’ve been fatigued for 3 years prior to diagnosis and medication, but if it’s the disease (mine is ET) you would think it would be constant.
Hi @HLowery this is a very personal reply, not a medical one.
My fatigue comes and goes because I believe it comes on with what personally stresses me (I do not deal with stress well since my diagnosis) and overdoing it emotionally, medically, physically or practically.
Sometimes it comes on instantaneously and everything is just all too much, sometimes it comes on up to 48 hrs later.
Sometimes I need to rest or have a sleep other times fresh air and appropriate exercise actually helps me.
I have more energy earlier and flag in the evenings.
I have got to know myself and how I function over the last 19yrs since diagnosis, but everyone is different.
Be kind to yourself
Hi @HLowery and @Erica. I have an MPN - myelofibrosis and fatigue is a constant issue for me. I echo a lot of what Erica has said. It was explained to me by a haematologist a few years ago that fatigue is a common symptom of myelofibrosis (and I think a lot of blood cancers) and that even when the blood cell counts are within normal range, fatigue can still be present. I don’t think even the specialists fully understand it. I find it can suddenly ‘descend’ and if practical I have to lie down and rest for a while to revive myself. It is very frustrating and not easy to deal with so I sympathise with everyone who experiences it. Warm wishes, Willow
I have Chronic lymphocytic leukaemia (CLL) only diagnosed last year and fatigue is the most annoying symptom. Sometimes I’m ok for a little while and then it just overwhelms me and I have to rest. I’m still working as a forensic nurse ( part time now ) and after a very busy day I’m wrecked for a couple of days. I guess it’s just about recognising the triggers and symptoms and resting when your body lets you know it needs to x
Hello willow just thought i would let you know that im on fedratinib for myelofibrosis. I have been on ruxolitinib but it didnt work…i get fatigue and get angry with myself because i cant do simple things i use to .i think this drug im on isnt working so well so now its down to consultant to figure out next step .ive had myelofibrosis for 2 years and its not nice waiting for results all the time but hey ho got to keep going
Hello @Suzyq it’s good to hear from you. I am sorry it seems the Fedratinib isn’t working for you. I am very sensitive to changes in dose of my Ruxolitinib. If the dose is reduced my bone pain really kicks in and is almost unbearable. The problem is that my Hb keeps dropping so I need transfusions of red blood cells. As a result of all the donated blood my iron level is now dangerously high. It is so complicated. I also take Danazol which seems to help increase the number of red blood cells but I don’t like the side effects. Have you ever tried Danazol? I agree, the fatigue is so wearing and I get frustrated too. Warm wishes, Willow x
Hi willow ive never been offered Danazol and it looks like i shall be back on ruxolitinib as consultant says after a rest from it it sometimes starts to work but i did get a lot of bone pain before on it .
Hi @Suzyq, thank you for taking the time to share this update with us. Waiting for results, and to find out next steps, is understandably difficult. It can also be so challenging coping with fatigue, and you’re certainly not alone in this. Please don’t hesitate to reach out to our Support Team if we can be of any support to you at all (Blood cancer information and support by phone and email | Blood Cancer UK). I think it’s shared higher in this chat, but we have some resources around coping with fatigue on our website, if that might be useful at all- Blood cancer and fatigue | Blood Cancer UK.