CLL Support Association
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Feeling tired

Diagnosed with CLL four years ago my outlook on life changed immensly. However, like many of us I have my 'good days' and 'less good' days, and trust me: It has nothing to do with depression or anything else. Reading through most CLL patient's posts and talking to friends with CLL, and knowing myself for almost 60 years, we have all one HUGE denominator: TIREDNESS!!!! Hence the doctors try to convince us all the time otherwise and keep on saying it has 'nothing to do with CLL, problably something 'else' causing the feeling of tiredness...' Yeah....??? Really doc? One day I feel as if I could conquer Everest, the next day I can hardly walk upstairs. Will the ratio of 1 red bloodcell against 36000 white bloodcells of which 30000 are absolutely useless and litter my system with rubbish not causing havoc for my physical engins? After all these years, collecting patient information and blogs like these the doctors must surely start to notice this factor ...caused by CLL. Who are they to tell us otherwise? Yes! Tiredness is a massive positive symptom for us all CLL sufferers. We MUST change our lives because of this simptom. Constant tiredness is detrimental for our normal everyday programme, for life goes on for healthy people out there, but we can't (always) keep up. Tiredness is NOT my imagination, or due to a secondary infection, or looking for sympathy, or because I feel depressed. It is a very physical experience. I can't just 'sleep it off'. Feeling the typical CLL tiredness, I can't clean my house, it is not good for me to drive, I can go to work, as long as I do not need to stand on my feet for hours or doing hard labour (for today if expected from me). Tomorrow I might feel super energetic again and people will look strangely at me and might silently think: 'Yeah, you can't convince me...'. (Just pouring my frustrated heart out to fellow CLL friends today, know you will understand).

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There are lots of people in this group who will know exactly how you feel and some have recorded their battles to make their doctors recognise how dreadful this tiredness is.

We have no choice but to keep advocating for ourselves and hopefully help our colleagues, friends, family and doctors to understand the impact of this on our lives.

In the meantime we carry on as best as we can.

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I should have mentioned that it's good to get the non CLL causes of tiredness excluded so definitely check your thyroid and diabetes screen checked and make sure you sleep well. Food intolerances, depression and stress can also have a big impact. Gentle exercise, such a walk outside, can alleviate tiredness although it's often the last thing we want to do.

Best wishes

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My husband was so tired taking FCR that he could sleep literally 15 hours straight. I had to encourage him to get up to eat and take meds.

After his numbers in bloodwork went haywire, he was taken off FCR. It wasn't until at least 8 weeks later that he actually began feeling strength coming back into his legs.

Prior to that he couldn't have walked a tenth of a mile to his shop and back. Also he had terrible swelling in his legs that wouldn't go down and it accompanied the tiredness.

Now after only a week on his Ibrutinib he walked 6 tenths of a mile with no problems and no swelling and no naps. He's sleeping well at night and we are thrilled and hope this continues.

Hope this encourages someone

Sincerely, Farrpottery

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Maybe we go about this all wrong.

It seems that too many physicians are still using misinformation from their 'out of date ' doctors school book of blood related fatigue.

Perhaps we should be asking the sceptic, learned " I read about this in a book once " to PROVE that our tiredness is most definately not related to our CLL.

Next time MadMina, just invite him/her to drop in here and explain to those of us who LIVE in the CLL world, why we are all in a mass panic, just because we have heard the word Leukaemia.

ygtgo

PS

( I hope that you are not using the moniker 'MadMina' on your heath notes ! )

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Spot on, I have had the same experience for the last 7 years and it is only in the last 6 months that my consultant has conceded that my tiredness and fatigue could be CLL related, prior to that he categorically ruled it out. It is unacceptable that the professionals that we place our trust in should so uniformed about the symptoms of this disease that that do not know about this extremely common issue. Even my wife does not understand the depths of the tiredness / fatigue and has labeled me lazy. I wish you well and urge you to stay strong.

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Hi Mad

We are certainly in agreement

In my case of being diagnosed in 2017 at 61 years old i was in superior condition and hiking well over 1000 miles a year and doing competitive events up to 50 miles one in the fall and one in the spring to work around ticks

I had to quit everything months before i was diagnosed and thought i just burned myself out and needed a good long break

While my CLL is mild my fatigue is not and they have exhausted things to test for i will see my CLL Doctor on the 28th to discus the next step as he does not blow off things he looks for a cause

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I used to have bad patches too. I used to hobble about and felt really whacked out. My GP at the time asked me to consider if I might be bi-polar rather than it being anything to do with CLL. You aren't alone in feeling like this. I know that wasn't much help. Sorry.

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Chronic fatigue is a common symptom of Cll. It's irratic unpredictable and for many it's debiltating. Many of us have uncovered and treated other conditions that contribute to fatigue but at the end of the day Cll fatigue is a fact.

It is incredibly disapponting to hear anyone much less a dr. dispute this. be well-bill

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The tiredness and fatigue for me is and was cll, I'm sure of it. About a year before diagnosed there were days where I had no energy and I blamed it on maybe i was fighting a cold/sinus infection, now I am convinced it was my body reacting to the changes from CLL. Over this past weekend I had no real energy. I really was not motivated to do anything then the last two days I felt better so I worked out and did my thing. I am taking green tea suppliments, vitamins etc... not sure if they make a difference or not but I'm trying at least. For me when I feel like I have energy I try to do everything like I dont have CLL. When I am tired and have those days I try to rest more. You know your body better than anyone so listen to it. Hope this helps.

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Before I was diagnosed, I used to say I had a cold in my bones, or that I had a bug that never came out. It wasn't like this all the time.

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Yes I can relate to that - I feel cold and washed out when my energy levels are low. Usually a cat nap gets me back on track! 😊

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It helps, I work hard to keep an income, but my energy and motivation to do hobbies, clean, repair and do home improvements is just not there anymore. I thought it might be a sinus infection too, because I would get dizzy sometimes. This problem is mostly from a lack of quality sleep for me. I never feel rested and refreshed, like when I was young..never, and I am only 54.

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I started taking potato starch about three weeks ago to help with sleep and it does in fact seem to help. I was taking Ambien three or four times a week and I only take it at most once a week now. It also increases dreaming which can be nice. I started by taking 1 tablespoon twice a day but now only take it once a day. I had never heard of it but if you Google it you'll find lots of comments. Getting a good night's sleep makes a big difference.

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My tiredness (as I originally thought myself) was blamed on menopause by everyone, until a routine bloodtest reveiled I actually have CLL. I'm not diabetic, do not have heart problems or high/ low blood pressure, neither anemic, good healthy weight, can still walk (occasionallt) up to 6km every day, do all mt housework self and use to have a very physically demanding full-day job as a property surveyor, including surveying huge commercial buildings. I never smoked, I do not drink more than one unit alcohol per week, never came in contact with strange solvents or radiation and yet ended up with this CLL sword above my head. The tiredness feels as if someone sucked all the blood and oxygen out of me. I can't i.e. reach shelves which are easy to get to, I can't climb stairs, I can't focus properly, and just have to 'wait it out'. I had to learn to say NO to people, and if I feel like this, I just have to go with the flow of tired-attacks. I sometimes feel high dosisses of Vit C help, or a fully-loaded smoothie packed with my special super ingredients, but sometimes even making a smoothie is too much for me. I just wish the doctors would stop shrugging the tired-symptom off, and give some recognition to this fact. I honestly jyst can't understand why they continue to talk us 'around it'.

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' ... as if someone sucked all the blood and oxygen out of me.

That, I recognize ... ' No Life Force '

I just use the term ... " I've hit the wall "

I propose we adopt a fatigue emblem ...

Google - Statue of the "Tired Man"

... and our new motto " Death by Yawning "

(I've used that on a few doctors to explain my fatigue - it gets their attention )

ygtgo

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On reading all your comments I am so happy that I havn't imagined the fatigue. The dr won't acknowledge this symptom!

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Honestly ... invite him/her to come on here and have a look at patient experiences ....

It would be most educational if they could explain to us ignorant laymen, why fatigue simply cannot be a symptom of CLL.

ygtgo

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Hello madmina. I am 63 and have had CLL for 4yrs that we know of. I had been going to my Dr for 2yrs complaining of always being ridiculously tired. He finally diagnosed me with CLL and then told me that it was the reason I was so exhausted all the time. Too many white blood cells and not enough oxygen to go round my body with less red blood cells. A layman's way of explaining. I also have always been very active all my life. Eat organic and have done for years. No alcohol except an occasional social wine. Don't abuse my body in any way. What we forget is most blood cancers seem to be linked to people who have had trauma in their life and emotional stress. That's what I believe is the main cause as well as the toxins we have to deal with in our lives in our food chain and airborne. I have found I can still do everything I want to do. Just has to be at my pace. Rest when I need to. Good luck.

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I agree with you about "trauma and emotional stress". I have always thought this. Top it with the anxiety of CLL and away we go! Good luck to you.

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Wow this sums up exactly how I feel - coming up to my first csncerversary and I feel in a good routine. Pacing myself, spoon theory and keeping my daily steps up all has helped- but I was a mess at the turn of the year and was signed off with 'CLL fatigue' so I guess my GP gave in to it! I had my vit D levels checked too and took 3 months of supplements.

As long as line management are aware there shouldn't be a problem as they have to comply with 'reasonable adjustments'. I have found colleagues are the worst at being intolerant - changing depts where no-one is aware has opened my eyes as to how different people have treated me!

R&R when required, (mini breaks!) spoon theory, mindfulness and gentle exercise (stretching, Pilates, walking) are also helping.

Very best of luck for your onward journey x

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Forgot to add that I take green tea and turmeric supplements - my levels seem to be gradually moving (rather than racing!) which can only be good! 😊

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I have no energy as well but i have found that exercise really, really helps. I do indoor rowing 7 days a week for over two miles. Sure does help and does not stress all your body.

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Thanks for saying what I have been thinking for 14 months since diagnosis!!

A nice restful eight hours sleep awaking refreshed and ready to tackle the world

is a thing of the past. For many of us it has been replaced by waking up feeling

like we have been in a fight in which we did not fare very well absent the busted

lip and missing teeth and or falling sound asleep sitting at our work desk at

2 o'clock in the afternoon. I'm feeling you, Nick

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I understand what you are all saying. My RBCs are fine (WBC 30K) however I am usually too tired to stand up straight and wake up tired out. I'd call that fatigue.

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The more I read on this site I realize that my sinus infection which I have had for years is linked to my CLL. I also have Insomnia,I can go to sleep-exhausted-yet wake up 3-4 hours later and sometimes cannot get back to sleep,it's almost as if I have an adrenalin pump in my body.I am really tired most of the time and people find it hard to understand.I am low grade CLL.last count 17,I also have 2 stents in my heart and Arthiritis throughout my body.I am only 65.I will not let this beat me though.Thank God for this site.

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