Hi
Does anyone have any energy boosting tips? With Chronic lymphocytic leukaemia (CLL) I expected to have fatigue but it’s been so much worse the last few weeks. I can sleep up to 12 hours at times and still be exhausted. I’ve always been fit and high in energy so I’m not taking this well. I’m still trying to keep fit going to gym, aquafit etc and taking turmeric and ginger shots, a few vitamins ie vit c, d and zinc. I eat well and I rest too Just wondering if anyone does anything else to improve energy levels ?
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Fatigue is just so awful isn’t it! It sounds like you are doing so much to help with it. I’m hoping others can share some good tips! X
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Hi @KayC I sometimes need to rest, I like an hours nap, other times I find I need fresh air and appropriate exercise, I am a walker which I find helps my emotional wellbeing as well.
So does my Pilates classes
I tend to function better in the mornings and have had it by the evenings.
Sometimes when I least feel like going out it is just one foot in front of the other with my music playing in my ears.
I find keeping to a routine, especially sleep wise can help. If I sleep for too long especially during the day it will ruin my night time sleep and quality pattern
My downfall is feeling better and then overdoing it and going back to my fatigue.
My fatigue can be brought on by what personally stresses me or overdoing it emotionally, medically, physically or practically.
What really has helped me is getting to know myself and how I tick.
Look after yourself
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Thanks Erica really helpful x
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Hi @KayC, thank you for sharing and I’m sorry to hear your fatigue has been worse recently. You’re certainly not alone and it is indeed a difficult symptom to cope with. Erica has shared some great examples of what works for her and I’m sure others will have coping strategies they can share, too. You may well have seen this already, but I thought I’d share our webpage on fatigue, just in case it’s useful for you- Blood cancer and fatigue | Blood Cancer UK. There are some tips listed there and links to resources. Do you mind me asking whether your team are aware? They may be able to explore this with you, and offer suggestions. It may be worth discussing your supplements with them, too, so they’re able to give you appropriate advice around this (I appreciate you may well have done this already).
Please know our Support Team are here for you if you wish to talk this over at all (0808 2080 888). Do take good care of yourself.
Best wishes,
Tanya.
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Hello all, I’m am a ‘newbie’ to the forum having recently been diagnosed with Chronic lymphocytic leukaemia (CLL), my diagnosis was only picked up after I mentioned to my doctor at a routine HRT chat that I was so terribly tired all the time and so has come as a shock to me and my family. I’m 58, active and work full time. Thank you Erica for your tips I can so relate to your story as I find mornings are fine but by the evening I’m ready to curl up and sleep. I take lots of vitamins but nothing seems to help, naps are fine but when you work that’s quite difficult. I wish there was a magical potion for this. Stacey.
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Hi
Welcome to the forum I’m sure you will find it helpful I know I have. I joined last year after being diagnosed with Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) in June. I’m 62 and still work as a forensic nurse part time. I was diagnosed incidentally too when my bloods were checked for investigation of headaches. It is indeed a shock when you get that diagnosis. It’s the fatigue that is the biggest thing for me as I have always been fit and active and enjoyed a great social life I still am keeping active but have definitely slowed down I guess we just need to listen to our bodies. That said I have 6 holidays booked for this year and next 
I’m cracking on with that bucket list !! Stay well x
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Hi @SWW1 and a great big welcome to our forum and yes, aren’t our stories similar.
You have probably read rather a lot about me but if you would like to know anything then please do ask.
I was 53yrs old when I was diagnosed and I hadn’t had a day off sick for nearly 30 yrs. I actually had a full time job and 2 part time ones.
I feel I could also learn a lot from you, and just reading your post brings the day of my diagnosis whizzing back even though it was 19 yrs ago. Life today, for me personally, is better than it has ever been, I have learnt a lot about myself since diagnosis and what I want to do and with whom.
The main thing is to look after yourself, self care and be kind to yourself and please keep posting
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Hi Kay, so frustrating isn’t it. For me it comes in waves. I am fine for a couple of months then have a few weeks where I feel dreadful. I have tried many things over the years but have finally realised that in my case I just need to stop fighting it and give in to it. I do what I can, but stop as soon as it gets too much and rest or doze. By not trying to battle on I find I feel better quicker.
It is all trial and error to see what works for you. Hope you soon feel better x
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Hi @SallyB I really agree with your tactics and I find I get to know myself better every day.
Look after yourself.
Thanks everyone it’s good to hear your own experiences x
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Thank you for taking the time to reply to me. I just wondered if you can shed any light on what a Trisomy 12 positive blood sampl is and a t(11-14) Negative is. I think these are a more granular test and when I ask the doctor it appears that further gene mutation tests weren’t done. Have you heard of this ? Have you had to have any treatment at all Erica ? Regards Stacey
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Idont blame you Kay. We will soon be on holiday number three and booking another for August. My only concern at the moment is my next blood test and getting the results in June and I will then book again. Travel gives me the most pleasure and I can’t imagine not doing this and so I’m determined to continue for as long as possible. Do you have any aches and pains? I have a slightly enlarged spleen and so this gives me a dull ache in my back, not pleasant but I can cope with this. Regards Stacey
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Hi @SWW1, no I am useless with medical terms, tests and results.
I was purely diagnosed with a blood test and symptoms.
That was 19 yrs ago and a lot has happened testing wise in that time.
I have not had any treatment, I have always been on watch and wait (active monitoring).
For more help with your medical question it is back to your specialist nurse , GP or whoever mentioned or did the test.
Others might assist further.
I will copy you query to the Blood Cancer UK nurse advisors in case they can assist. @BloodCancerUK_Nurses
You sure are a girl for your holidays, we await hearing all about them, go for it and enjoy.
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Both of these are genetic tests and provide more information for the diagnosis. Knowing if you have particular gene changes in your cancer cells can also help consultants predict what treatments might work best. We have some information about genetic tests here - Blood cancer tests | Blood Cancer UK and here - Chronic lymphocytic leukaemia (CLL) tests after diagnosis | Blood Cancer UK. Some treatments benefit certain cancers with only certain gene mutations. I’ll tag in @BloodCancerUK_Nurses in case they can shed any more light but please don’t hesitate to ask these questions to your CNS and/or consultant as it’s important you feel informed about your individual circumstances.
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Thank you this is interesting. I had realised what the tests were for but suprised that my letter said they didn’t do the further mutation tests or the IGHV wasnt tested either, i have mentioned this to my clinical doctor but she didnt really explIn why they werent done and this is a worry to me. I wondered if other people had this issue. Thanks Stacey
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I’ve recently started to get a lot of aches in my joints and also bone pain in my arms. It’s starting to interfere with what I can and can’t do. I can’t decide if it’s ageing and a spot of osteoporosis, ongoing issues fro a car crash I had in November , issues with the degeneration in my cervical spine or the Chronic lymphocytic leukaemia (CLL). Proper wreck at the minute !!
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Oh @KayC I am so sorry to hear that you feel that you are a ‘proper wreck’ at the moment.
Aren’t we complex beings?
I really related to your post as I know all too well about the aches in my joints and arm pains. I am ageing, I have osteoporosis, I had a car accident in 2016 and had whiplash etc., my back is degenerating through scoliosis and several vertebrae that have fractured and compressed over the years and of course my Chronic lymphocytic leukaemia (CLL).
Perhaps this is a good question for your GP, specialist nurse or consultant and word it exactly as you have to us for them to untangle.
Please let us know how you get on and really look after yourself.
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We certainly have some stuff in common Erica ! I am intending to go to my GP just need to get round to it . 
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