Bone Pain ?

[Amberesque]

Has anyone had bone pain from CLL / SLL? Can you describe where and what it feels like for you?

[WhalesAreAmazing]

I have constant right hip (pelvic) bone pain (mostly in the back, but all over). They can't definitively say it's CLL related, but my PET scan results should give me an idea. I've also had some femur pain.

[Amberesque in reply to WhalesAreAmazing]

I'd like to get a PET to get to the bottom of my pain but those scans aren't available for CLL/SLL where I live.

[Alibaba26]

I get daily pain in my legs…on occasions it can feel like my leg is breaking the pain can get that severe. I also get pain in my joints with cracking and popping associated with this.

[LeoPa]

healthline.com/health/bone-....

Bone pain is too common among the elderly. It is difficult to find a direct connection with CLL in a specific case.

[Jamie_james]

I’ve seen it described in the past as like having toothache in your bone.

For me it’s a deep icy ache. I’ve had similar sensations when I’ve had flu as a child.

Amitriptyline is very effective In dealing with the pain.

[Buckeye64]

If you google Chronic Lymphocytic Leukemia: Time to care for the survivors you will find a study published on 3/15/24 that discusses many of the current issues (including bone pain) people report that have cll and the possible causes for them. I have had bone pain for almost 20 years now and I was only 40 when diagnosed, so age is not always the cause. I hope you find this report useful. It finally validated many of the problems I’ve experienced over the years but was told they didn’t occur with cll. Please keep in mind that they also always said we had the good cancer. And true, cll may not have caused it, but chances are the treatment at that time did. I hope you find relief.