Managing fatigue

Continuing the discussion from Newly diagnosed CLL:

Hello all

I have recently been diagnosed with Chronic lymphocytic leukaemia (CLL), I had Covid when I got the diagnosis and now I think I have some symptoms. It’s good to see so many post from people who have managed their symptoms for a good number of years. I have a physical job and I’m experiencing fatigue and night sweats, raised glands in my throat and I wonder if anyone has some tips for managing fatigue and if anyone has been able to continue with a physical job? I’m 51 and have always been fit and healthy so this is a change for me!


Hello @Gingercatmum

Welcome to the forum. Thank you for posting a little about yourself and your questions. Hopefully you will get some answers and good support from others with Chronic lymphocytic leukaemia (CLL) or other blood cancers, also struggling with fatigue.
Fatigue can be an incredibly frustrating symptom to manage, especially when you have been fit and healthy, and working in a physical job. Be kind to yourself, don’t expect too much from your body, this is a new diagnosis and things take time to settle.
There are some tips and advice on our pages: Fatigue , you may find some of this helpful. However, others on the forum may have their own ways to manage fatigue, I’m sure they’ll share their experiences with you.

If fatigue persists, do let your Haematologist or Nurse specialist know. Sometimes a referral to a specialist physiotherapy team can help, they offer advice and support with cancer related fatigue (CRF). If you are under the care of a bigger Hospital, they may even have a Fatigue Clinic (do ask your team about this).
When do you next have an appointment? If the symptoms you have described; night sweats and enlarged glands are new, please do let your team know, just a quick call so they can document this before your appointment - they will want to know as you may need a blood test taking.

Please keep posting about how things are going for you, and if you do find something that works for your fatigue, please share that too.
Best wishes, Heidi.


Hello @Heidi_BloodCancerUK

Thanks for this advice it’s really helpful - this is all new to me!

My next appointment with my consultant is at the end of April. My GP just had some blood tests done to check how I am recovering from Covid and my lymphocytes have increased, the other symptoms are new. I’ll get in touch with the hospital on Monday.

Thank you :blush:


Hi @Gingercatmum I love your name, welcome to our forum.
@Heidi_BloodCancerUK has given you a brilliant response.
I have Chronic lymphocytic leukaemia (CLL) and manage my fatigue.
What I would say, from personal experience, I had a very sore throat, non covid, flu, cold bug over Christmas and it really took it out of me and my fatigue set in and lasted for weeks.
What I find is that I am more susceptible to infections and that it takes me longer to recover.
I do tell my medical team of any symptoms I get.
I was diagnosed at 53yrs old and had a semi physical job which I continued until I was made redundant 5 yrs later.
I had had no sick leave since I had a day off when I was about 25 yrs old.
Have you discussed your diagnosis and any needs you might have with your employer and how you can work together with reasonable adjustments.
At diagnosis I used to get a bit feint if I stood too long, so the adjustment was that I did not travel on crowded public transport.
My hint is to write a diary with what you do and when you feel fatigued so you can work out your cause and effect. My fatigue can be set off if I overdo it with what personally stresses me, or I overdo it emotionally, physically, medically or practically.
Since diagnosis I do not deal with stress well because I think my emotions are always on high alert.
Please do ask me any questions and look after and be kind to yourself


Hello @Erica

Thanks for your response, I’m feeling very supported already :blush: and it’s so helpful hearing about your experience.

I’m self employed and yes I’ve had conversations with myself about adjusting my work load & hours but I have been slow to respond to my own needs :joy: my job is quite physical, I’m a Sports Massage Therapist.
It’s been difficult managing the emotional stress and expectations of my clients in the past few weeks, I’ve had to make a slow return to work after having Covid in December (my first time!) and now the fatigue kicks in on Friday if I’ve over done anything in the week. I’m desperate to get back to my hobbies! I can recognise the fatigue symptoms early but I don’t feel able to adjust my day when I have clients booked in so I have to be more proactive with avoiding those fatigue symptoms - mine start as heavy arms, walking differently upstairs, sore throat and raised glands, difficulty holding a conversation for more than 15 minutes. That’s a good tip to keep a fatigue diary, thank you. I haven’t told any of my colleagues or clients about my Chronic lymphocytic leukaemia (CLL) yet, I’m not sure if it would have a negative effect on my bookings.

I hadn’t realised that I could or should contact my haematologist or specialist nurse about my symptoms, I do have a number for the nurses sent by leukaemia care with an information booklet.

I really understand how you feel about additional stress, I find I don’t have the capacity for anything else at the moment and I did have a bit of a melt down in January, I have started to see a therapist to talk through the things that bother me.

Thank you again for responding.


Hi there i suffer from fatigue…my iron levels are not great

My job is pretty physical at times …i drive an HGV

Quite simply you got to allocate yoursekf a couple of extra hours at night

If you get seven now…have 9

If you have 9 already…have 11

Naps help a little but the trick is to have more sleep…proper rest.

All the best…Lee


Thank you @Leefer thats good advice, I’m not sleeping well at the moment.


Hi Gingercatmum
This is my first reply to someone else.
I joined end of last year having had Chronic lymphocytic leukaemia (CLL) diagnosis in late 2015 aged 54 You’ll find everyone here just wants to help in anyway they can.
The fatigue I have found from catching Covid (I was worried for a time about long covid), overdoing it, lack of or disturbed sleep and more recently after Christmas I got all the symptoms of shingles. I have found my recovery takes longer from infections and injuries and bruises etc take time to disappear. Then balanced with trying to keep some level of fitness it’s hard to then not overdo it and set oneself back. For example the neuralgia in my chest comes returns and armpit glands get sore when I do.
(Reading the other replies I hadn’t thought of telling the haematology my check up is soon so I’ll get blood check done and tell them then).
Do try to adjust build in siesta or use your break times for rest read a book no rushing off to the shops for essentials at lunchtime. Be kind to yourself as a sports massage therapist you now the benefit you provide. I get one every 4 weeks. I’m tired after but the next day I feel so much better for whatever exercise I do.
Extra vitamin and Iron tablets are something I’m considering next for when I’m particularly feeling exhausted.
Telling people at work is a tough decision and only you’ll know when the time is right - if you have a real friend at work and not a boss then consider telling them. I decided not to as I was planning on retiring to the coast and just brought that forward it took 2 years. A Chronic lymphocytic leukaemia (CLL) diagnose is life changing mentally first then physically tiring and that’s while we are still on a watch and wait list (where I intend to remain!). We don’t know how long we have and as many will testify they are here still 20+ years later from diagnosis.
So if you can start making small changes to your work life balance and as they say everyday be kind to yourself have an energy bar to hand, correct level of fluids and listen to your body. I don’t know if your into supplements cod liver oil for joints but I’d imagine your wrists must ache after treating clients all day plus your standing for the majority of the time.
Hope this helps


Hi Tim
Thank you so much for replying to my message, I’ve found your advice so helpful and it’s been with me all week. You said it’s the first time you have replied to someone on here and I’m really thankful that you decided to respond to me I really can’t explain how much difference your words have made.
I’ve changed my work schedule to working 3 days a week instead of 4 and I’m finishing earlier most evenings and I’m recovering much quicker when I get fatigued now.
I’ve been worried about long Covid too and hearing about your Covid experience is really comforting - Googling CCL & Covid just gives scary results! I did contact my nurse team and they sent me for a blood test the following day and I had the results and a phone call with a nurse to go through them the day after - VIP treatment! It’s definitely worth contacting them, they said to let them know about any changes to your health or symptoms.
I’m pleased you have regular sports massage, it’s so beneficial when you find the right therapist. I love my job, it’s very rewarding but it does take most of my energy and I’m concerned that my fitness and strength has diminished in the past few months., I’m a cyclist and I do a bit of yoga/Pilates and swim in an outdoor pool in the warmer months (I found I was get repetitive virus infections swimming indoors) but I haven’t really managed to do anything since November. What kind of exercise do you do and how to you balance your energy levels?
You mentioned supplements - I do take some, including magnesium for muscle recovery and sleep, garlic capsules, moducare and coenzyme q10 for immune heath, vitamin d & fish oils- I did take a multivitamin but my B12 was higher than normal so I would be careful about taking a multivitamin, it might be worth asking for some medical advice on supplements.
I’ve decided not to tell my colleagues about my diagnosis, just my close friends and family and my next door neighbour that way I have people to talk to when I need to but I won’t be treated differently.
I hope your move to the coast has worked out well for you. And thanks again for replying :blush:



Firstly thank you for replying back to me and second, so pleased you have made those changes and obviously seeing positive benefits.

It is, initially quite worrying after being first diagnosed who and who not to tell from friends, family and work. When you’re trying to get just the facts and internet Chronic lymphocytic leukaemia (CLL) is plastered with confusing mostly out of date USA and UK invariably contradictory and I agree scary!

Certainly sounds like you have it straight in your head and perhaps now have an approach to physically overcome the fatigue.

Really sounds like you have good support around you and are adapting your life well at the same time keeping fit.

To answer your questions.

I have kept active all my life and

after diagnosis I didn’t initially change things much continued walking the dogs and doing some sport football and a little light cycling. Xmas 2019, I watched a hospital documentary about leukaemia patients going through new blood trials. One of the patients had a similar lifestyle age etc etc to me but sadly his body could not cope with the 3rd phase of treatment. I decided that I needed to build my stamina, get fitter and lose weight. To be stronger to cope with future treatments for when the time comes if offered. I remain positive that advances continue to be made. I started from scratch

Covid then hit! Followed by instructions stay at home for the “clinically extremely vulnerable“ determined, I started static cycling everyday and doing core strengthening then as things opened up I began to run every other day eventually getting to achieve my target of a half marathon distance. I only say this as it was a step too far I “endure it” not “enjoyed it” and was far happier do 5 or 10k runs alternate days to cycling (3 days a week of each) with one day rest. Aside nursing injuries that’s what I have been doing since but hey I’m fortunate don’t have to go out to work and recover from that too!! Though of late, my recovery from Covid and this shingles thingy has scuppered me a little. I run probably once in every 5 days at present and only 5k and cycle other days. I initially lost 3+ stone (I needed to - far too many business lunches in my career!!).

The magnesium is a good idea I hadn’t thought of that.

My wife, my best friend with many wonderful qualities including being an ex nurse, keeps a keen eye on me pushing myself too soon and too quickly.

Something else you might find helpful is mindset. I have learnt more about myself in the last 3 years in learning how to push myself and what I didn’t know I was physically capable off and to not say I can’t do something more to try, that I’m only competing with myself, it’s not a race and if I’m knackered give myself permission to adjust what and how I do things. For example maybe run a shorter distance then cycle later in the day to lessen the direct impact etc.

We don’t know how long we have but not many people get given a crystal ball that helps to decide what is truly important and the time under a watch and wait system that guides us.

Oh I’m not making a bucket list yet either :wink:

Take care


Fatigue seems to be a fact of many of our daily lives that we live with, cope with and manage. I get to know myself so much better as every day passes. I believe my fatigue comes on either immediately or up to 48 hours after I have overdone it emotionally and/or physically. Initially I did not connect the cause and effect. I also know since diagnosis I do not deal with what personally stresses me as well, suddenly everything is all too much and I often get emotional and feel the fatigue setting in. Personally I also do not think anyone who has not experienced fatigue can understand it. There seems to be more evidence coming out to say that gentle exercise, fresh air and ‘taking your mind off’ helps. Personally I think there is a time for rest and a time for some exercise, fresh air and in my case interaction with people. When I make the effort I seem to feel better afterwards, I have heard it gets the endorphins going. I also think that trying to declutter my life and organising myself helps me. I also try and eat regular healthier meals, but to also have the odd treat, and to try and get enough sleep. I am a great one for a nap or a duvet dive, when needed, as well. I would be interested in what others think?


Hi my name is Lynne and my partner has lymphoma. His treatment is every 21 days on a trial Plus RCHOP. After a week of chemotherapy he seems to hit a slump or as though his battery has run down, as though he hasn’t any energy at all. We try and make the best of things when he is feeling ok. I have taken driving up after 41 years of not driving!!! Just to help with going to doctors , hospital etc. It has totally changed our lives. But we are quite positive and just get on with things as when we can. All the best to you.


Hi Lynne, I think you describe fatigue so well by ‘hitting a slump or as if your battery has run down’. Wow, taking up driving after 41yrs of not driving, what a star. Don’t forget being the family member can really take it’s toll practically, emotionally and physically and often nobody thinks to ask you how you are. The Bloodwise support line on 0808 2080 888 is there for you too and they are available Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm but you can get in touch whenever you want and leave a message - they say they will get back to you within one working day. This community forum is also here for you so please keep posting what it is like being you.


I actually couldn’t agree more! I still work two days a week but it keeps me going! It is local, and flexible, and I try to alternate my days so I have a rest day in between. Like you, Erica, I have got to know my body and know that physical and emotional stress both trigger that awful fatigue when you just feel like doing nothing. With my recent leg ulcer, I have had to spend as much time as possible with my legs raised anyway, so - as frustrating as it is sometimes - I give in to it. When I feel a spurt of energy, I make the most of it, but don’t best myself up for sitting around a lot. You are so right that energy is needed for everything - even (or sometimes especially) seeing or talking to people. I have withdrawn a lot, which is not necessarily a good thing if it’s overdone, but I know that those that matter are still out there! I agree about the eating too. I am more sensitive to what I eat but still eat healthily - and feel no guilt at having chocolate when I fancy it! I never used to be one for napping, but now my fatigue and severe anemia mean that sometimes I can’t help myself. For the first time in my life I occasionally drop off in front of the tv! I’ve also given up trying to explain to people what true fatigue is. They just don’t get it and I am tired of being told they are tired too!!


Dear Marilyn, I currently have terrible fatigue due to being on chemotherapy and one of the things I’ve learnt is eating large meals takes an enormous of energy as the blood flow goes to the stomach during digestion and away from the brain, it’s sometimes referred to a as food coma. So smaller lower carbohydrate meals with protein and some fat more often tends to help with this problem and also not too much fluid with meals as this also makes digestion more difficult. I hope this is some help to you. Best wishes as always. Alfie


Wow, Alfie, thanks so much, I had never heard of food coma, but it really makes sense and I think so right. I also did not realise that too much fluid with meals made digestion more difficult. I was brought up to have a cup of tea with meals. I don’t now but I do try to keep my drinking of water intake up during the day. I am so sorry to hear that you are suffering from terrible fatigue due to your chemo, I think it feels so debilitating. On top of everything else you are contending with too. Thanks so much for your posts they are so welcoming, inspiring and educational, take lots of care.

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Oh, Marilyn, the knock on effects of your leg ulcer must be so hampering and frustrating. I think you are really doing well still working 2 days a week. You are aware you have withdrawn a lot and the knock on effects of that. I have come to realise that interaction with people, especially the priceless ones, really helps me, they say laughter is the best medicine and I think that is so true and as for that special bond when you can just ‘be’, however that manifests itself, with someone is exceptional. But at the moment I am impressed you realise that you might need to decide how to use your depleted batteries, perhaps housework is a low priority, but then I find it so frustrating when I see my ‘to do’ list escalating. Yes, if one more person says they are ‘tired too’. Take it steady.

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Agreed! Thanks for your comments Alfie and your interesting insight. That explains very well why I only seem able to finish a simple basic meal these days as more complex dishes - however delicious - just require too much energy. I need to drink more water so over-drinking is not a problem for me! I’m sorry the chemo is giving you terrible fatigue and I do hope this alleviates for you soon. Best wishes Marilyn


Funnily enough - after I wrote this I sat for a bit and then felt the urge to get up and do something. Doesn’t happen often! So I did some cleaning and feel really good for having done it. When you stop looking you tend not to notice the dust building up ;-).

We are going to stay overnight with some friends this weekend and I am so looking forward to it - they are utterly accepting, non-judgemental and uplifting people … the kind that give you energy instead of draining it!

Thanks, as always Erica, for your validation and support. I hope you are feeling well at the moment.

Best wishes to you.


I think this, although brilliant for me, was meant for our mate, @Alfie.

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