CLL Support Association
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Fatigue

When did you start feeling fatigued? I have just been diagnosed and my labs are not to bad at all but I am so tired all the time. Just wondering if it’s cll related or not. Thank you all!

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I started a year before being diagnosed when my wbc was around 14. It comes and goes but never really feel like I get back to 100 percent

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Thank you for your reply. It’ helps to know it’s not all in my head because sometimes I feel like it is.

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14,000?

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Also stress seems to make it worse so with your recent diagnosis and trying to sort it all out may be contributing to you feeling fatigue

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Totally agree!

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Absolutely.... just thinking about what you'll face in the early days after diagnosis is exhausting.

I'm three years in, 18 months on Imbruvica. I can go strong from 6 am until about 3 pm. Then a one hour nap and I'm pretty good to go for the rest of the day

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Definitely seems to come and go. I agree stress does seem to contribute.

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The fatigue is well understood at the top tier places (MD Anderson, Dana Farber in USA) and is related to the BCR, BTK, JAK2 and STAT Genes and STAT Pathway. It makes no difference if you have Leukemia for 1 day or 15 years it can effect you and is unrelated to any blood counts. It effects women (especially young women, under 50) 3x more often than men but is seen in both genders and all ages. It involves the over production of Cytokines and Chemokines...the same things your blood makes when you have the Flu or Ebola or something. It is both mental and physical...the worst for me is my mind screaming "you are sick, injured, go find a cave, lick your wounds and don't leave until you are better."

Do not let a doctor tell you it is in your head. Well it is, but it is real.

This is an article I read the other day where they are reclassifying Chronic Fatigue Syndrome as an auto immune disorder based on the over production of Cytokines. This what what is happening to CLL people who have fatigue.

nytimes.com/2017/11/27/well...

Scott USA/Maine

Worried about too many Medical Facts junking up my head

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That makes me feel better because I heard for about a year, no medical reason...I am currently in chemo because my CLL accelerated, but before that-in my 50s and felt so bad I felt like 75-80.

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I have a medical study showing exactly this, I have half a dozen somewhere...I hate reading that stuff...sort of creeps me out...but I can send it if you want to read all kinds of crazy but definitely over production of cytokines and chemokines...I FEEL like I am sick, even though I am not...but my body knows something is wrong (I think) and is trying to help out...but just making things worse.

Scott USA/Maine

Wondering why my body won't listen and stop making cytokines

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Yes please send it to me! I have felt so frustrated. Of course right now I’m really fatigued and have developed an autoimmune anemia on the chemo, but I felt really bad all the time when my hemoglobin was normal. Oncologist kept brushing it off. My husband and I have run his clinic for 30 years and we ended up closing the clinic last year because I was just too tired.

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My fatigue was what prompted my visit to the doctors. Mine comes and goes also I gind stress and anxiety plays a key factor. Like many on here have stated I do believe its the cll causing alot of my ups and downs, but i find keeping active and positve helps alot. Of coarse i dont over due it and i listen to my body, but i believe if you are able exercise and diet are key.

Chris

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Chris

I had a mild fatigue for a year then got something called Bell's Palsy...think it is a stroke...terrible headache, half your face goes dead...not serious but I went to ER. My fatigue since then has been almost incapacitating....every single day, every single action....I went and cut some firewood with my chain saw for 20 minutes yesterday and literally thought I might drop dead after....I dunno what to do...I look healthy, but feel like I am 150 years old. My poor wife carries 95% of the load these days and isn't being married suppose to be like a 50/50 thing?

Scott USA/Maine

Worried about my wife more than myself

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I so understand. Good and bad days. Make sure you get your vitamin D and B checked.

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My doctor has checked everything...all pretty normal. I didn't go get the colonoscopy he wants for me...I put that off until next year...I figure the universe bent me over and had it's way with me enough this year....I don't need more.

Scott USA/Maine

Not picking up any more soap this year

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Hey Scott,

Sorry to hear about the hard time you are having. I had a TIA (mini stroke) last winter due to a collapsed caradic artery in my left neck. I went to a physio guy in the summer for a bad hip, and he got me exerising and stretching. I find starting out with something easy like a brisk walk enough to get your heart rate up and sweating was the best way to start. Of coarse after this I felt wiped out, but in a good way. Gradually it got easier and i am still taking it slow, if i need a day to just relax i do that, today i am drywalling a room downstairs lol, l understand how you feel with the work load my wife is a school teacher and does alot of work around the house and when i find myself tired on some days i feel useless. Not sure of your age, i just turned 47 and have always worked in the construction field, though theses days i just supervise. Hope you feel better soon.

Chris

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I just turned 52. Before the Bell's Palsy I felt great, mostly...minor low fatigue for a year...not bad though......now I struggle to walk even half a mile with my wife. 20 minutes of using my chain saw yesterday for fire wood left me feeling like I was gonna die right then and there....8 months ago I could of cut wood for hours then stacked it.

Scott USA/Maine

Worried about Freezing this Winter

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YES, being tired is a symptom of CLL. One of the reasons you originally go to the doctor and have blood tests is because of being tired/drained all of the time.

I haven't had treatment yet but I'm told that treatment is supposed to help with this and give us more energy. I truly hope so because I could not work full time right now. Resting is my main activity. Take care, we are all in this together and it will get better!

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Why do so many of us CLLers feel like this yet the doctors won’t acknowledge it! I’m told it’s all in the mind and my blood count is stable. Just want them to say it’s part of the condition.

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Hazel

This is definitely not "all in your head". It is real and any doctor who tries to tell you otherwise, well, they need to go back to skool or something. It involves the JAK2, BTK, BCR and STAT Genes.

Scott USA/Maine

Why am I up at 5am??

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Am 79 closing on 80 dx¨d for CLL 6 years ago, on W&W since then, and no major symptoms, except heavy fatigue that sets in between 2 and 3 pm , and you can set your watch on it, So my GP, blessher soul, who told me to take some blood tests 6 years ago, suggested something very practical and pragmatic that has helped me continue working.:

Arrange your affairs so at , lets say 2 pm, you go home or find a whole in the wall take ur shoes off m loosen your tie and take snooze for an hour or two.. By the time I come back to the world, I am as fresh as a daisy.. Another nugget that has worked wonders is that I use a cane if I am going to be standing or walking too much. Those two, have made a difference for me I strongly recommend them. and it has helped me despite living in a hectic 25 million population city that is 2,200 m or 7500 ft above sea level

Good luck and God speed

My name is David

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That explains a lot about my experience; thanks!

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14,000?

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As others have said tiredness and fatigue are very common symptoms of CLL. I was diagnosed 8 years ago with WBC in the 20's and I was experiencing debilitating tiredness and fatigue for about 4-5 years prior to diagnosis which at the time I put down to aging, so it could be an early symptom. My hematologist refuses to acknowledge that the CLL is responsible for this symptom which leaves me feeling like that I know more about this disease than he does which does not fill me with much confidence in him. It seems incredible to me that with all the data and information available on CLL that a clinician responsible for treating patients with CLL is either unwilling to accept or unknowing of the link with tiredness and fatigue.

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Thanks for the great info, Scottxxoo. Knowing what's going on actually makes it easier to tolerate.

Regarding your dear wife handling the load: she seems to get it that marriage is 100/100. You're down--she pulls the load. Intentional love produces care and sacrifice. It's the labor part of love. And the deepest. I know you worry about her and are grateful. But she can handle it--she knows the score. On behalf of all of us, give her a hug.

Very best to you both.

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It’s interesting that a lot of you say the same thing. That around 2:00 is when fatigue sets in worse. Mine is the same. I feel it starting at about 12-1 but by 2-3 I’m exhausted.

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My doc, one of the pre-eminent CLL specialists in the U.S., clearly acknowledges the association between cytokine production and fatigue--it's real!

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Fatigue is the most common symptom across ALL cancers. Remember your body is fighting the disease 24/7/365. How would you feel if you had influenza 24/7/365?

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I get very fatigued sometimes and my numbers are similar, they go up and down. I had it so bad before I was able to retire that I literally felt tired all of the time and even a four hour outing about knocked me out. I would go home and crash and sometimes I'd be extra tired for a couple of days after. At that time I didn't even know I had CLL. Now that I am retired it isn't as bad and part of that is because when I need to rest I can but I still get it. Stress exacerbates it tremendously. My doctor, at first especially, said it wasn't from CLL. It pissed me off because the one good thing that came from the diagnosis for me was finally finding a reason for all of the fatigue. I also had pneumonia twice in one year and other than the CLL I was perfectly healthy so what in the heck could it have been from other than that? I then joined a group on Facebook and found out it is the #1 complaint in CLL sufferers regardless of what stage they are in so I felt better. I've also read and seen videos from respected CLL doctors saying it is the #1 symptom.

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So interesting reading all this. I haven’t responded in a while. Have been on Imbruvica for 5 months and numbers look great. Only problem was that I was exhausted still (same as many of you—so tired that I needed a rest by 2pm). Finally my Ferratin levels were tested (never had been!) and I was so low I basically had depleted my iron stores being on Imbruvica and being pre-menopausal (not a good combo since iron is sapped from both). After several iron infusions over the last several months, I am no longer anemic and feel much better. I recommend always keeping an eye on Ferratin levels—especially women with CLL.

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So glad I'm part of this group.. you all make me feel sane. Im struggling like many of you with fatigue especially around 1-2 pm and have been seen with my eyes rolling in meetings while I try to stay awake. I've thought it was in my head but clearly not. The severity of fatigue ebbs and flows and im yet to pinpoint a cause or trigger so I can try to manage it better.

If I manage to find one I'll be sure to come back and share. Its good to know Im in good company.

Loran 🌻

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At least 6 months before diagnosis - maybe longer. It's very common in CLL.

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Many doctors say that there is no medical reason!! The CLLSA Quality of Life Survey carried out in 2013/14 certainly highlighted fatigue as a significant issue.

Here is the initial synopsis

cllsupport.org.uk/qol-surve...

The results went through formal analysis and the results were sent to all Haematologists in the England by Dr Follows as Chair of the UK CLLForum at the time.

cllsupport.org.uk/cll-sll/l...

Assuming all other possible reasons for your fatigue have been discounted then it may well be related to CLL. If doctor still says it's not medical then this survey from the above/below link will be useful.

ukcllforum.org/Patient-Supp...

You are not alone feeling fatigued but hopefully you will manage to live life to the full despite it.

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Oh dear. No wonder I'm so fatigued, I have chronic fatigue syndrome. Fibromyalgia and cll. My doctor just ordered b12 and vit d tests. I was hoping it was just vitamin deficiency as I'm vegetarian. Sounds like it could be a combination :(

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Likely so. I’m 57, on my fourth go-round, now on venetoclax. I’ve been experiencing varying degrees of fatigue since my first treatment in late 2014. Exercise, keeping your brain engaged (I’m in grad school), getting fresh air, and vegging out with Netflix or Amazon are my go-to solutions. Be proactive and informed. Best to you.

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I felt fatigued before I was diagnosed and no anemia present. Just the high white count. Doctors don’t always acknowledge the fatigue with normal hemoglobin levels but it is there!

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I was just diagnosed in September. On watch and wait. I am exhausted all the time. I also get a lot of aching.

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