Hi I was diagnosed with Chronic myeloid leukaemia in March 2023.
It was quite a shock as I thought I was having another low bout of anxiety and depression. My anxiety meds were increased twice before I was sent for a blood test which led to my diagnosis.
I’m taking Imatinib which has lowered my white blood cell count.
The fatigue put me out of action for a few months along with the continued anxiety and crying. My consultant referred me to a psychologist who recommended I change my anxiety medication. After a few more sessions with her and a change of medication I began to feel better in myself and enjoyed the Summer.
I have gone down hill since and have been anxious and crying again.
The fatigue is preventing me from getting out of bed most mornings. I have to struggle with my conscience to get up. My head feels muzzy all day long and I have to really push myself to do anything.
Is this a common feeling? Will that constant tiredness ever subside?
I feel I just want to stay in bed sleeping or reading.
I’d appreciate to hear other people’s experiences.
Thank you for reading.
Hi @Kellogs thanks so much for posting and welcome to our forum.
I bet your diagnosis was a shock, I can remember and replay my diagnosis in my mind as if it were yesterday and it was 19 yrs ago.
I wonder if you have a specialist nurse, your psychologist or GP that you could speak to and tell them how you are feeling now, the symptoms and impact on your life.
Are your medications reacting with each other?
Why the change now?
You have your questions in your post.
I hope others can share their experiences.
I hope you get answers soon as I find fresh air and appropriate exercise can, in some circumstances, really get me out of myself and do me good. It also builds up my muscles and strength. I have also got to know my fatigue and how to manage it over the years.
I will send you a couple of links from the Blood Cancer UK website on fatigue and staying active and mind and emotions just in case they help at all.
Blood cancer and fatigue | Blood Cancer UK
Blood cancer and keeping active | Blood Cancer UK
Blood cancer: mind and emotions | Blood Cancer UK
Please do get medical advice first though and be pleasantly assertive.
I look forward to hearing from you soon and please be kind and look after yourself
Hi Erica
Thank you for your reply.
I have turned a corner and my tears and anxiety have stopped.
However, I’m still very tired and can only do a few things before I feel tired again and have to rest.
I’m finding this quite frustrating.
I had my 3 month apt on the telephone today. My white blood cell count is in normal range but my haemaglobin is low.
When I told the Dr I was constantly tired he replied Why?
This made me feel unsettled I felt as though he didn’t believe me.
Is it normal to feel so tired with Chronic myeloid leukaemia?
Thank you
Hi @Kellogs I attach the Blood Cancer UK information on Chronic myeloid leukaemia
Chronic myeloid leukaemia (CML) | Blood Cancer UK
The link I gave you to fatigue highlights that you are not alone. It is completely natural to be frustrated.
Words can really cut me to the quick.
You are doing brilliantly turning a corner so soon, please do keep posting as I look forward to hearing more about you.
Be very kind to yourself
Hello @Kellogs. Welcome again to this forum. How silly (in my opinion) for that doctor to ask you ‘why?’ As a fellow patient living with myelofibrosis as opposed to Chronic myeloid leukaemia fatigue is one of the symptoms we have to live with sadly. Also if your haemoglobin is low that will be another factor. My haemoglobin is constantly low and it adds to the tiredness. Please keep being kind to yourself. Over the thirty years I have lived with this blood cancer I have had some rather unhelpful things said to me by medics who should understand but sometimes don’t. However it is great we can support one another on this forum. Sending you warmest wishes, Willow x