bone pain - is it related to CLL

[Catalinapl]

Dear members. My mum(67y) has been initially diagnosed with CLL ( Based on basic blood results). We are still waiting for hematologist appointment ( it’s polish reality to wait even several months ). My mus suffers from severe bone pain. She told me that she felt like her bones are burning. Additionaly in one of the blood results there was an information that a single monoclonal protein has been detected. Dr Google told me that it might be multiple myeloma. She also has smudge cells so I am confused. Hematologist was sure that it was a CLL but at this time ( 1,5 month ago she did not have bone pain).

My questions are

- is bone pain possibly related to CLL

- can be monoclonal protein detected in CLL ( some internet medical sources indicate that it is possible )

hope it makes sense. I am not a native speaker

[MistyMountainHop]

I'm not sure if it's related to CLL, but I get bone pain in my thigh bones. I've been on W@W for 9 years without treatment, so far.

Maybe some kind soul will enlighten us.

[lankisterguy Volunteer]

Hi

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We all hope you and your mum get some answers from her doctors. This can be a scary disease, but most comes from anxiety, since we usually have lots of time before treatments or other decisions must be made.

Some of your concerns are familiar to us- See this list for the 595 time bone pain was mentioned in previous postings: healthunlocked.com/cllsuppo...

As you can see from those discussions, bone pain is usually connected to some of our treatments, but not always.

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We may be able to provide better answers if you list your mum's country and health issues in your profile: healthunlocked.com/user/Cat... here is an example: healthunlocked.com/user/New...

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Len

[JigFettler Volunteer]

A definitive diagnosis wont be made till a Haematologist has seen your Mum and done all the tests. Until such a time try to resist Googling answers. It wont help and just increase your anxiety. When you know the diagnosis - doing research is much more helpful.

Let us know what the Haematologist says. If its CLL - then this Forum has much to offer you both by way of help, information and support.

Jig (UK)

[SofiaDeo]

I have what feels like deep bone pain, I am told it is unusual with CLL. Mine is mostly hip and thigh. Since CLL involves bone marrow abnormalities, and since most of our marrow is in the hips/thigh area, I do not doubt that some of us can "feel" something going on, and some of this can be felt as pain. It's mostly the acute leukemias that report feeling bone pain.

healthline.com/health/leuke...

[Catalinapl]

Thank you all for your responses. It means a lot to me. Any form of support! On Monday she has a scheduled visit.

[sandybeaches]

Perhaps a Vitamin D level can be done as at times a very low level may cause bone pain.

Sandy Beaches

[Ladydi49]

I’m in the U.S. and I have a local hematologist (my husband goes to him) that I see once in awhile who is willing to coordinate care with my specialist @ Moffitt. I saw him recently and told him after my first Moderna shot I got hit with widespread muscle and joint pain, brain fog, digestive issues and insomnia. He said the joint/ muscle pain was the Cll and that blood and lymph fluid go everywhere in the body. I also told him that many years ago that I was told I had fibromyalgia but never was bothered much by it. I then went to a rheumatologist once a month for 3 months and he ran the same tests each time that would be what a rheumatologist would order and they kept coming back normal so I’m thinking maybe fibromyalgia?

[Catalinapl]

CLL specialist told her that this pain is not related to CLL. She is on watch and wait. Next visit is scheduled in 3 months. In the meantime she will visit another doctor to check what causes the pain.

He also told her that monoclonal proteins might be detected in CLL.