Fatigue

[Buttons42]

Good Day Everyone

My question is, should I be feeling fatigued with lymphocytes around 43 and haemoglobin

at 12.1 g/dl or could the fatigue be caused by some other blood deficiency such as iron or

vitamin B12.

Thanks very much

Ken

[Lawand1]

Hi, we’re all different but I never felt fatigue with those numbers. Eat well, live well and don’t let this stop you until it must. I’m 16 years in and still have a great life!

[Buttons42 in reply to Lawand1]

Thank You

[Pacificview]

Pretty normal for CLL. For me, being retired I could take naps as needed. You will just have to figure out what works for your body.

[Buttons42 in reply to Pacificview]

Thank You

[Panz]

My numbers are much lower then yours and I am on my third line treatment and receive IVIG monthly and am approaching 35 years…..I have a great life! Know your body, be positive, eat healthy and update all vaccines….no live vaccine.

All the best to you!!!🎃🎃🎃

Panz

[Buttons42 in reply to Panz]

Thank You

[Newdawn Administrator]

Hi Ken,

Truth is that many CLL’ers at all stages (including me in full remission), report fatigue that is pretty inexplicable in clinical terms. I see from your other posts that you’re 80 yrs of age so perhaps a slight increase in the need for rest may be explained but it depends how severe the fatigue is.

Ask your doctor to do a full work up to explore if there’s other possible reasons for your fatigue…B12 levels, thyroid, glucose levels etc. You mention some joint pain and I find that this can cause more exertion fatigue. Any pain meds can contribute to tiredness too. Not sure if you sleep well but that can contribute to daytime fatigue.

Keep yourself active and engaged is the most important thing and you seem to be doing that 😊

Best wishes,

Newdawn

[Buttons42 in reply to Newdawn]

Thank You

[Walkingtall62]

Looking at all the related posts it looks like you are not on your own. And I fear I may be joining you. Take care

[Buttons42 in reply to Walkingtall62]

Thank You

[JigFettler Volunteer]

Newdawn sums up our fatigue predicament with CLL very well. There are other causes and that's the job of your family Doc! Remember other medication you're on cld also cause fatigue. And ofcourse sleep is so important.

The fatigue that is caused by CLL itself is curious. I had bone grinding fatigue during watch and wait. 1 week into my chemotherapy the fatigue totally evaporated. So did my lymphnodes and spleen. I can only deduce there was a change in my blood, and I suspect the cytokines! Cytokines are produced by the immune system when it is stimulated. Often we know we are "brewing " something viral because we feel a weary "unwell" sensation.

I say cytokines, the immune system's communication method, because my Flu and Covid vaccinations make me fatigued in the same way, albeit briefly.

Of course anaemia caused by CLL, crowding the bone marrow space, will cause fatigue. I didn't have anaemia, my CLL was in my lymph nodes. We are all different, as are our respective CLL illnesses.

Notwithstanding my deliberations above, its unlikely your white cell count itself will cause fatigue, a Haemoglobin of 12.1 may affect your exercise ability, but should not cause fatigue at rest.

Mind you, you report enjoying 18 holes of golf! That's an excellent workout!

Or, are you feeling that's getting harder! The golf trolley heavier...?

Greetings

Jig in the UK.

[Buttons42 in reply to JigFettler]

Thank you

[esn1967]

I eat and sleep well but have had fatigue since one year prior to my diagnosis in 2022. Initially I thought the fatigue was from dealing with my son's girlfriend who was living with us during covid. Then they moved out and the fatigue remained.

My WBC is 23,000. My lymphocytes are at 64.2%, Lymphocyte Abs-14.3.

I am in stage 0, W&W.

[Buttons42 in reply to esn1967]

Thank You

[Notmuchenergy]

I felt fatigue all the time until I took Spatone Iron drink 2 or 3 times a week and my haemoglobin went to 13 .3 ish. I keep it just above 13 with 2 or 3 doses a week. 14 years on W&W

[Buttons42 in reply to Notmuchenergy]

Thank you

[karenrge]

My husband will have 21 years with CLL in December. Fatigue is the worst. He takes a couple naps a day sometimes. He is now taking Jaypirca. He keeps busy inside the house and out.

[Buttons42 in reply to karenrge]

Thank You

[Livingwith67]

sadly I was diagnosed because of the fatigue. So although the majority of people seem to get fatigue when approaching treatment, this was not the case for me. My numbers were lower than yours about 14 when I was diagnosed.

The interesting thing is b12 does help me on some levels as does iron but not massively for the fatigue.

[Buttons42 in reply to Livingwith67]

Thank You