How do I defeat extreme tiredness?

[Nucleusman]

Waking up tired and most days feeling exhausted. My brilliant haematologist checked bloods and has given me an infusion of iron plus daily folic acid. But still tired. Is this a symptom of CLL and/or Avalabrutinib?

[CaptRon1976]

Your hematologist seems to think you are anemic from iron deficiency. If he is correct it would take time to restore. Probably not that simple however, but a good place to begin. If you don’t improve then follow up with him/her and proceed to a more thorough evaluation. Not likely directly related to Acalabrutinib. CLL itself can cause fatigue for several reasons including crowding bone marrow diminishing production of red cells. This would be gradual and would show on previous blood tests. However, it is usually more complicated including how strong your kidneys are which are involved in red blood cell production. Undiagnosed blood loss should be ruled out. Stick with your hematologist to get it sorted.

[Nucleusman in reply to CaptRon1976]

very useful advice and thanks

[CycleWonder]

Fatigue can caused by many things and it can be hard to determine the cause or causes for any one person. But it is worth pursuing because feeling tired after sleeping is challenging.

Have you been tested for sleep apnea? The tests are easier now (at least in the US). You do the test at home now. This made a huge difference to my husband.

Are you sleeping well? Beyond sleep apnea, not sleeping well due to anxiety or other issues will contribute to fatigue.

If you can exercise, exercising more can help give you more energy and generally help you sleep better.

Depression can make you tired. It’s not unusual to feel depressed or anxious about having a “diagnosis”. Talking to a therapist can help. I talk to mine every other week. It’s incredibly helpful.

Aches and pains can also make you feel tired.

And then there’s all the internal workings which I don’t know much about.

I hope you find a solution to your fatigue.

[DoriZett]

Along with the size of my SLL lymph nodes - extreme fatigue was my main symptom to treat. The medication may also cause fatigue. Even in remission after Acalabrutinib monotherapy - I still struggle with life altering fatigue. I have had to simplify my life, and pace myself in order manage self care. Wishing you the best.

[LeoPa]

How is your diet? Any possible nutrient deficiencies? Vitamin levels are okay?

[Nucleusman]

possibly deficient but not shown on blood test I do take Vit D a day

[CycleWonder in reply to Nucleusman]

You might try adding more protein to your daily meals. As we age, we need more protein.

[Nucleusman]

thanks in what form do you suggest??

[skipro]

Nucleusman,

I am hard pressed to say. I've heard multiple physicians being treated with Acala and multiple on this site who seem to have NO symptoms and I often wonder if I should have chosen this over V + O.

Here is my journey just as an example of what I've tried to sort through.

Awe, I am in the same conundrum! Is it the Ven, is it a leaky CPAP, is it the low thyroid, is it the low testosterone, is it just that I am 66 y.o., is it the FCR is 2018 and the V + O at present. Is it the diet???? Is it a case of Long Covid or Long other virus.

I had been improving 7 months into V + O then contracted what turned out to be a combo of Rhino Virus (common cold), and Enterovirus ( the one that used to cause polio but can cause cold and flu) around 12/5/23. The worst of it cleared after a couple of weeks but I have never returned to the pre 12/5/23 status.

I've tried changing to higher protein and fiber, going through all the CPAP checks, adding Thyroid med, Testosterone injections, and just forcing myself to get out there. I've worked with a Psych doc on depression.

Bottom line, I don't know. I do get out 6 days a week and do some outdoor fun activity and for me that involves everything mountain like hike, or ski or snowshoe. I feel great but some days I over do for 4-5 days, then crash and sleep til 9 or 10 am even after going to bed at 10 pm, or take 1 hour naps.

I've asked my CLL doc about a drug holiday to see if it's the Ven. But she suggested waiting 2 more months, the 1 year mark of a 2 year Ven course, to do a Bone Marrow Biopsy to see if I can stop it all together..

My outdoor activities have been a Godsend. I can get out in the forests in the mountains almost daily and all my symptoms and concerns are gone for the few hours heading up, doing the activity and the adrenaline rush for several hours before the crash. So I do late afternoons so the crash hits at bed time.

Good luck and God bless

Ski pro