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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 11 2:17pm
In reply to @colleenyoung "@britman, fatigue is a hard symptom to determine the cause. What did you learn from your..." + (show)
@colleenyoung

@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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Hi thanks for asking, my blood tests came back normal so I am not sure why I am feeling so tired, my doctor thinks it could be a virus that’s going around.

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1 reply
marynoelle | @marynoelle | Jan 12 8:17am
In reply to @ravenh "I have those symptoms" + (show)
@ravenh

I have those symptoms

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ravens, are you saying you are having the burning sensation or fatique?

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terlato | @terlato | Jan 13 10:37am

12 years ago I had very bad painful burning, sweating with nausea. I actually could not take the pain and profuse sweating then passed out this has happened at least 4 times and then was diagnosed in 2018 with CLL. No one could find the cause and recently the sweating and nausea has gotten worse and almost every day! So they are looking into Neuroendrocrin tumor somewhere in my body. Next week I have an endoscopic ultrasound to check my pancreas. They think this is where it is coming from. There are 2 modules on the head of the pancreas. Remember they tell you CLL won’t kill you something else will. Pray for all of us that are dealing with this disease and the mysteries that come with it!

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2 replies
markgventnor | @markgventnor | Jan 13 10:48am
In reply to @terlato "12 years ago I had very bad painful burning, sweating with nausea. I actually could not..." + (show)
@terlato

12 years ago I had very bad painful burning, sweating with nausea. I actually could not take the pain and profuse sweating then passed out this has happened at least 4 times and then was diagnosed in 2018 with CLL. No one could find the cause and recently the sweating and nausea has gotten worse and almost every day! So they are looking into Neuroendrocrin tumor somewhere in my body. Next week I have an endoscopic ultrasound to check my pancreas. They think this is where it is coming from. There are 2 modules on the head of the pancreas. Remember they tell you CLL won’t kill you something else will. Pray for all of us that are dealing with this disease and the mysteries that come with it!

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OMG! Yes, that is exactly what the oncologist said. "CLL won't kill you something else will." This is maddening! The constant itching, the pins and needles and not being able to sleep. I am seeing a Neurologist on 1/19/24. I will mention what you wrote to my doctors.

I hope you are able to get some relief. Thanks for your help and the information. Mark

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marynoelle | @marynoelle | Jan 13 10:52am
In reply to @terlato "12 years ago I had very bad painful burning, sweating with nausea. I actually could not..." + (show)
@terlato

12 years ago I had very bad painful burning, sweating with nausea. I actually could not take the pain and profuse sweating then passed out this has happened at least 4 times and then was diagnosed in 2018 with CLL. No one could find the cause and recently the sweating and nausea has gotten worse and almost every day! So they are looking into Neuroendrocrin tumor somewhere in my body. Next week I have an endoscopic ultrasound to check my pancreas. They think this is where it is coming from. There are 2 modules on the head of the pancreas. Remember they tell you CLL won’t kill you something else will. Pray for all of us that are dealing with this disease and the mysteries that come with it!

Jump to this post

I didn’t have the burning sensation until after my diagnosis. My hematologist said it didn’t have anything to do with the CLL. Just hope he is correct.

Hope everything works out for you.
Prayers going your way! 🙏
Take good care!

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markgventnor | @markgventnor | Jan 13 10:55am

Yes, I have the same symptoms accompanied by a rash all over my body.
No doctor, dermatologist, allergist, oncologist, internist has been able to help me. The situation is beyond frustrating. If I find something that helps I will post it here. Also had light therapy, steroids, medication, creams, nothing worked. Good Luck. Sorry that you are experiencing this issue.

Mark

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1 reply
terlato | @terlato | Jan 13 12:47pm
In reply to @markgventnor "Yes, I have the same symptoms accompanied by a rash all over my body. No doctor,..." + (show)
@markgventnor

Yes, I have the same symptoms accompanied by a rash all over my body.
No doctor, dermatologist, allergist, oncologist, internist has been able to help me. The situation is beyond frustrating. If I find something that helps I will post it here. Also had light therapy, steroids, medication, creams, nothing worked. Good Luck. Sorry that you are experiencing this issue.

Mark

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I also had a rash in 2015 that they couldn’t explain. Just it me on mega doses of Allegra! I could have had CLL at that time,but not one doctor said that even though my white count was high. Kept telling me it was a urinary tract infection! I also found out that the Epstein Barr virus reactivated and was causing some issues like sever muscle pain.
Sometimes I take an antibiotic and it helps the pain again no explanation from the doctors.! So I just do what’s best for me.
It’s crazy!

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markgventnor | @markgventnor | Jan 13 2:30pm

Thanks for your reply. Sorry about e.b.v.! I have done a lot of reading about that virus. Makes everyday a challenge for you. I hope you have relief.

Good luck and take care.

Mark

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dbuel2001 | @dbuel2001 | Jan 14 3:41pm

Be aware that lymphodema might occur.
I have it in my legs. But it's been there for years.
Good luck

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