CLL and weakness? Fatigue just a state of mind?

[whitravis]

CLL sources say weakness can be a CLL symptom. Is this a direct effect of CLL on muscle tissue? Or indirect: fatigue-decreased activity= weakness?Is fatigue in CLL primarily an issue of mindset, as my onc seems to believe?

[Newdawn Administrator]

I’ve come to interpret ‘medical mindset’ as ‘we don't understand it so it will have to be your fault’.

Always amazes me that literally thousands of otherwise sane and often previously active CLL patients are somehow seen to choose dropping into an exhausted daytime sleep and feeling fatigued as an alternative to simply getting on with their lives! Why? 🙄

Let’s look instead at other possibilities. Cytokine activity, muscle and inflammation involvement, sub clinical infections with an immune system constantly at battle and yes possibly some degree of underlying anxiety.

I’d be wanting a haematologist over an oncologist for some possibility of greater understanding on this particular blood cancer.

Regards,

Newdawn

[Theplodder in reply to Newdawn]

Fatigue can be as a result of low haemaglobin….. lack of oxygen getting round the body means a lack of energy.

I’m familiar with this as I’m currently under CLL treatment and tomorrow will be receiving my 15th and 16th pints of blood / transfusion to raise my haemaglobin levels.

A

[Newdawn Administrator in reply to Theplodder]

Yes it certainly is as I know from experience. I’d assumed this clinical reason would have been factored in before the ‘mindset’ theory was assumed however.

Regards,

Newdawn

[whitravis in reply to Theplodder]

Thank you

[RosettaClapp in reply to Theplodder]

I found the 'Dracula effect' after blood transfusions amazing ..just came alive again !

[loveRicky in reply to Theplodder]

May I ask how low your hemoglobin should be to require transfusions? Thank you.

[AussieNeil Partner Administrator in reply to loveRicky]

In Australia, packed red blood cell transfusions are recommended when your haemoglobin falls below 8.0. Below 6.0, there's increasing risk of organ damage.

Neil

[Santoshax in reply to Newdawn]

Beautifully said - I’ve come to accept that “sometimes I can and sometimes …despite all best intentions, desires and mindset..I simply cant”…

Instead of regretting missed social occasions including celebrations for grandchildrens 21st, weddings, parties or anything ….I treasure the moments, simple pleasures.

I think our bodies are under loads of duress .

Cheers Helen 🇦🇺

[craterlake in reply to Newdawn]

thanks for your well written reply Newdawn ,, even though i am now only slightly anemic .. i still have this weak feeling and have to use more of my will power to keep moving , working , exercising etc.. i used to be very active and didn't think twice about popping up from my chair and getting busy doing what ever came to mind .. my feeling of fatigue has nothing to do with my mind set ...in fact my mind has to be more determined than ever to keep functioning so as not to alarm my dear wife .. she has seen me struggle just to eat when my hemoglobin was down to 6.4 .. Love is an amazing motivator so i want to assure her that i am o.k. .. i would find a new ONC> if i were whitravis ... I always appreciate your comments and support you have a given to all of us .. hope you have a great 2025 ... blessings , james

[Newdawn Administrator in reply to craterlake]

Thank you James. You too 😊

Newdawn

[lankisterguy Volunteer]

Hi whitravis,

You picked one of our most mentioned topics, you can find some of the past discussions if you look for the box on this page labeled:" Related Posts

*CLL and Fatigue

*CLL and fatigue

*CLL fatigue

*Degrees of fatigue?

*CLL, Fatigue, & Depression

>

This answer I gave just 2 days ago might also help: healthunlocked.com/cllsuppo...

>

See these 1839 past postings on fatigue:

healthunlocked.com/cllsuppo...

Len

[Theplodder]

it’s a direct result, if your haemaglobin level drops you don’t have enough red cells to get oxygen around your body resulting in fatigue.

Alan

[whitravis in reply to Theplodder]

Hemoglobin is normal.

[PennyLane2024]

Every single CLL patient is physically and mentally unique. Some of us have physical issues that cause fatigue (anemia and neutropenia in my case) and some of us don’t. Some of us have mental issues that make us fatigued and some of us don’t. Best way to counter the fatigue is by taking steps to improve your physical and mental state. Exercise daily. Sleep and eat well. Join a support group or a therapist if you feel anxious or depressed. I got a puppy and a massage therapist who specializes in cancer patients.

[Snakejaw]

It’s a bit tricky. CLL has put a ceiling on my ability to exercise, I used to enjoy high intensity strength training, now I get light headed or dizzy if I push too hard, and get really wiped out.

Personally I’ve found regular but controlled exercise to help a bit, lately I’ve enjoyed skiing as it allows me to push or relax at my own pace. Try to find a balance or activity that works best for you.

[Coldplaybest in reply to Snakejaw]

I can completely relate to your approach to exercise. However I'm impressed that you can get insurance cover for skiing. John

[MN1999 in reply to Coldplaybest]

Curious as to why insurance would be an issue for a physical activity?

[Santoshax]

definitely not just mindset…whilst it really helps to be chilled and accept where we are at…our bodies are under immense daily duress.

Not only CLL but from what I’ve heard the cancer fatigue is pretty much universal across all the many “variants”.

Hope you find good advice and great support from your medical team.

Helen 🇦🇺

[bennevisplace]

I vividly recall complaining to a fellow hillwalker about the chronic fatigue that had crept up on me, describing it as some kind of "systemic collapse". Maybe that was exaggeration, but I was definitely sensing a drop-off in energy.

That was in 2004/5. In January 2006 a routine blood test first revealed a slightly high lymphocyte count, soon afterwards confirmed as CLL.

Your fatigue is real, and you've been given several possible causes, at least one root cause being CLL. IMO the best way to deal with fatigue is accept it as part of the package, and do what you can to not make it worse. That is: eat well, exercise, sleep well, avoid stress. And sometimes, no matter what else you had planned, it's better to give in to fatigue and just lie down for an hour or two.

[AnneHill in reply to bennevisplace]

When I regularly went swimming I told a friend about the fatigue. I went home and went to sleep. A few months later her husband was diagnosed with cancer. She admitted she hadnt understood but now did. Her husband was glad to talk to me. I get very little done in a day. We need to do what we can and even the consultant is understanding. Anne uk

[Smakwater]

Fatigue is a broad term.

Fatigue that never goes away where you are to weak to dress yourself or walk to the bathroom is much different than being tired and taking more naps.

Some fatigue is related to anemic conditions or other identifiable cll related conditions while others have no apparent cause.

None the less it seems that the broad medical response to offset fatigue is to exercise more and eat right.

I find it amusing to tell someone that can't walk to exercise more or to tell someone with nausea to eat more broccoli.

JM

[CLLquilt]

To me, this is not a state of mind but a true symptom of CLL. I knew something was not right when I could only do about 30 minutes of garden work before completely collapsing in exhaustion. I watched a video on exhaustion and CLL and was heard it was a “state of mind “ and the way to overcome it was to keep at it. A week later I learned that I would need to start on acalabrutinib as my numbers were very high.

After talking with my doctor she said it’s a sign that my body is fighting and while staying active IS important - it’s also important to listen to my body and rest. I am now doing shorter stretches of exercise and movement but do listen when my body says it’s time to rest.

Good luck!

[Stamphappy]

Your fatigue is real. You've had a tremendous shock being diagnosed with cancer. That fact alone sends one reeling and contemplating how this effects your life and the lives of those you love. On top of that is fitfully sleeping if at all. Not hard to see why we are fatigued. Even when we sleep, our mind is still working in the background trying to solve our situation mentally, spiritually, physically. Now, when our blood counts cause more issues, we are assaulted even harder, from all sides.Bottom line- Be kind to yourself! Listen carefully to your body. When you feel tired- rest. If you're restless, go for a walk in nature. Even a short walk does wonders for body, mind, & spirit. Don't neglect your hobbies. Whatever your "happy place" is, GO THERE. At first, I couldn't force myself to do my hobbies. My heart wasn't in it. So I found another hobby- We got a beautiful Pug puppy and dedicated ourselves to making his life the best it could be. The joy he brought us was immeasurable!! Listen to your heart. It will tell you what you need to feel whole again.

The advice you recieved, from our wonderful gang, is spot on. Your sense of fatigue is very real. If your current doctor is telling you it's " in your head", please, find another who truly understands " our fatigue". Hugs and best wishes. I'm glad you found this group to support you.

[phebamom]

I do not have CLL. I am being treated for a similar cancer, Multiple Myeloma with kidney involvement. I also have a chronic auto-immune disease, Giant Cell Arteritis. I am on 5mg. prednisone, probably for life. I had a flare last month and was given 10mg. prednisone for 5 days. Oh my, I could do anything. Then when pred went back to 5mg, back to having that invisible hand on my back, pushing me to just walk across a room on some days. The fatigue is real. Calling it fatigue does not do it justice. It is a bone melting fatigue. It is the invisible hand on your back that pushes you to do the simplest task. On those days revel in the fact that the simple task gets done. In my case blood work is a mess, with anemia of chronic disease, the effects of revlimid and Darzalex, not to mention the IVIG transfusions. Saying it is a "mindset" is cruel and blames the patient.

[B13532]

Heck no, when WBC is 119 & platelets 98, how in the world is that a state of mind. Let the labs speak for themselves. Doctors know that.

[ncosto]

I can only add my own personal experience. 6 months ago, I was working out 2-4 times a week with a personal trainer and taking yoga and cardio classes. I've been rehabbing since knee replacement surgery 3 years ago - all so I could get back to the ski slopes and hiking. I live at the beach and did an almost daily walk on the boardwalk of 2-4 miles. Four months ago I started treatment with ibrutinib and I am experiencing the most crippling fatigue. My labs do not reflect any reason for the fatigue, so my assumption is that it is the drug. I am hopeful that at some point, I'll either finish the treatment or my body will adjust to the chemicals and I'll be able to resume my active life.

[CycleWonder]

There are many aspects of our lives that can contribute to fatigue. It has been my experience that fatigue with CLL is a real symptom but can be aggravated by other causes.

If you can address other causes, then your fatigue should be less than it would have been with your CLL.

Doctors who are deciding when to start treatment may be looking for the fatigue associated with low hemoglobin, which is a stronger sensation of fatigue. That doesn’t mean the other fatigue is not real but not as relevant to the decision about when to start treatment.

A reasonable doctor working with you to monitor your CLL and possibly suggest it’s time to start treatment will discuss whether your fatigue, associated with low hemoglobin or not, is interfering with your daily living.

Doctors in the past have been reluctant to start treatment “too early” because studies have shown it does not result in a longer life span for the patient. But, the new variety of treatments and also the possibility of fixed term treatments has softened this somewhat.

CLL affects patients differently and this should be taken into account.

In summary, there are two actions you as a patient can take now to address your fatigue:

1) Find another doctor (hopefully a CLL specialist) to take the lead on your CLL;

2) Work with your regular doctor to address other possible causes of fatigue, making sure your regular doctor gets the OK from your CLL specialist with regard to any potential treatment that may adversely affect your CLL, such as taking iron supplements, etc.

These other causes may include pain, arthritis, lack of exercise, depression, sleep problems, digestive issues, stress, diabetes, too much alcohol, sitting too long between periods of movement, heart or lung issues, etc.

[ChristyAnne_UK]

Forgive me.. I've not read all the comments, so I may not be the first to suggest this..

Have you ruled out Long Covid?

[Islandvibes]

I’m so sorry you’re feeling so low. I have to admit I’ve had fatigue for years with increase the last 4 or so. Dx in 2021. My CLL load is not that high 20 % shown in bone scan. I was on CLL meds with no real improvement. I’ve been tested for everything but have not identified any cause. I have a few autoimmune diseases so they r probably contributing. In the past I have had doctors tell me they didn’t exactly know why so fatigued, now can just say from CLL. I have just learned to live with it and not worry about what I don’t get done in a day . I’m Lucky to be retired. My suggestion to you is get a different doctor if you are able. There is nothing wrong with suggesting a medication that could help mental well being but to say it’s a matter of mind set is just ignorant.

[ArtistBlacksmith]

Hemoglobin being low is an obvious medical cause. My levels of this are fine, but I have low platelets- a condition called throbocytopenia. The defective B cells target platelets and remove them as if it is a virus. I think my fatigue is caused by my body working hard to make platelets and new B cells and recycle all the old ones- it is like having a constant viral illness that never goes away. Regardless the fatigue is real and well recognised. All the major leukemia organisations note it as do the major research centres.