Chronic Lymphocytic Leukaemia: New symptom of burning sensation

Posted by marynoelle @marynoelle, Dec 31, 2023

I was recently diagnosed with Chronic Lymphocytic Leukaemia. No treatments required at this time. Hematologist will monitor. I had absolutely no symptoms and it was picked up on routine bloodwork. I am now having a burning sensation in upper back and arms. Also pain in legs. Wondering if anyone else has experienced this and would know what could be causing it.

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britman | @britman | Jan 1 2:10pm

I was diagnosed with CLL about 10 years ago and up to now I have had no symptoms but recently I have been feeling fatigued, especially in the morning, I feel like sleeping all day. Not sure if it’s a side effect or whether it’s related to something else.

marynoelle | @marynoelle | Jan 2 8:53am

In reply to @britman "I was diagnosed with CLL about 10 years ago and up to now I have had..." + (show)

It’s great that you have been doing well for ten years. Did you experience any symptoms over this period? How long were you followed by a doctor?

britman | @britman | Jan 2 12:01pm

I haven’t had any symptoms yet unless the fatigue I am experiencing now is related, I am going to see my Doctor this week and hopefully find out. Up until a few months ago I was going to a local Cancer Centre and seeing a Doctor there but I was told that I could now just see my own family Doctor.

marynoelle | @marynoelle | Jan 2 2:26pm

Hope your visit with your doctor goes well!

marynoelle | @marynoelle | Jan 7 8:00am

I’m still experiencing a burning sensation in my back and arms in the morning when I get up. Wondering if anyone diagnosed with CLL experienced this and would know what could be causing it.

virb | @virb | Jan 8 9:06am

Hi Marynoelle, I have also recently been diagnosed with CLL and have been having the upper back burning/ tingling symptoms you mentioned, as well as bone/joint pains. I have had a lot of blood tests, imagining and a bone marrow biopsy last month and my oncologist wants to redo a biopsy and blood tests soon.
So far, we still don't know why this is happening.... Good luck with everything!

marynoelle | @marynoelle | Jan 8 9:57am

In reply to @virb "Hi Marynoelle, I have also recently been diagnosed with CLL and have been having the upper..." + (show)

Thanks for your response. I seem to be getting sicker. Having bloodwork this week.

Would you mind letting me know if you find out why this is happening.

virb | @virb | Jan 8 10:23am

In reply to @marynoelle "Thanks for your response. I seem to be getting sicker. Having bloodwork this week. Would you..." + (show)

I am sorry to hear that you are getting sicker Marynoelle. I hope your bloodwork this week will help clarify what is happening. My doctor mentioned possible peripheral neuropathy from cryoglobulinemia that showed up on my last tests. I will keep you updated as soon as I learn more. Would you please mind do the same? It is all a learning curve!

marynoelle | @marynoelle | Jan 8 10:39am

In reply to @virb "I am sorry to hear that you are getting sicker Marynoelle. I hope your bloodwork this..." + (show)

Thanks! I will let you know as well.

Colleen Young, Connect Director | @colleenyoung | Jan 10 8:35pm

In reply to @britman "I haven’t had any symptoms yet unless the fatigue I am experiencing now is related, I..." + (show)

@britman, fatigue is a hard symptom to determine the cause. What did you learn from your doctor's appointment? What testing or cause is being explored?

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