Weakness

[Cowboyxyz]

Hi,

I was diagnosed with CLL recently and am noticing I’m weak especially first thing in the morning. Does anyone else experience weakness soon after diagnosis? Thank you

[lankisterguy Volunteer]

Hi Cowboyxyz,-

Fatigue is one of our most complicated issues to deal with, there are many possible causes that are unrelated to CLL or treatment. There are some that come from infections arising from our wonky immune system, or anemia from deficient vitamins (D3, B12, Iron, etc). It takes a determined patient and an excellent medical diagnostician to step through the process called differential diagnosis to eliminate the simple causes and narrow down on the root cause. medlineplus.gov/lab-tests/d...

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You may want to read these past posts:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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Len

[JigFettler Volunteer]

Like lankisterguy says - its complex. CLL will mainly do this - through cytokines associated with the condition.

BUT other causes exist too - some important and fixable.

I live in the UK - and this is something we would take to our GP / Family Physician.

Here in the UK fatigue is a very common presenting symptom. I went to my GP 1 yr before I was diagnosed with fatigue. He reminded me I was no longer young (58) and I was working too hard. No testing was done at the time, I colluded with him. Hey ho!

Have your symptoms arrived very recently and suddenly? Have other aspects of your life changed at all?

I know when I was on Watch and Wait I had huge neck lymph nodes - and had sleep apneoa - my wife observed my breathing disturbance when asleep. Of course this contributed to my fatigue. I mention this as you say you are weary in the mornings. I have had FCR since and all that is gone - and no fatigue.

Check out your favourite GP and tell them how you feel, and dont let them merely tell you its CLL. Some checking for other stuff is needed.

Lastly - CLL does make one fatigued, with that goes a reduction of activity and out the window goes fitness... physical exercise tolerance. I measured this objectively in myself. Many I am sure dont. I have a thing about it... and it will contribute towards fatigue of CLL.

One more thing (!) Make sure you have a Carbon Monoxide monitor in your home / car too. I know 2 folk who had fatigue - not CLLers - it was due to a dirty burning gas fire...

As Lankisterguy says - complex!

Jig

[Cowboyxyz in reply to JigFettler]

Thank you for the useful information. You may be right about sleep apnea, I’ll ask the my Doctor about that. I just hate the fatigue. Thank you again and best wishes.Jana

[Hidden]

I have experienced “profound weakness” several times. I even went to the ER once, they said it’s the leukemia. Everything else has been ruled out.

[Cowboyxyz]

I was afraid of that.Thank you for responding.

[Jacksc06]

Hi Jana. Sorry to hear about your diagnosis. i am afraid that fatigue tends to come with the territory. I was diagnosed at the end of 2015 and still have to push myself to get motivated. Hope you can find a way to "Get going" but remember to not overdo it. Best wishes.