Hi guys - my husband has been newly diagnosed with CLL. He has been complaining of intense bone pain and joint pain. Sometimes the pain is burning and achy for long periods of time; usually in his legs or back. Other times he says that the pain is shorter-lived and feels more like intense shooting of pain. And always roaming throughout his body during the day. Is this a normal condition of CLL? We are getting nervous about what this could be.
Thanks for any comments or advice.
Take care everyone.
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I had terrible joint pain when I was first diagnosed 7 yrs ago. Since then I have altered my diet and lifestyle . I am dairy free, gluten free (for the most part but hey I love pasta! ) and sugar free. I also walk, exercise and do yoga most everyday. Not sure if that really is what made my joint pain almost non existent and if my pain was related to my CLL in any way but maybe it could help your husband too. Best of luck to him. I hope you find something that helps.
What is his diet like? Eg. Healthy appetite? Vegetarian or not? Etc.
Often a topic here is of resolving vitamin b12 deficiency.. it has many symptoms.. then anaemia (many causes, many symptoms - ask the doctor about his most recent blood results: any signs of anaemia?).. then magnesium deficiency..
‘Migrating arthralgias’ do occur in Lyme disease.. but best to approach this somewhat methodically, keeping a note of daily symptoms and degree of pain / discomfort, so that you have detail to give the doctor.
GPs seem very stressed and/or over-worked, but we must press them for answers where quality of life is suffering.
My wife referred to it as "migrating pain." Tramadol mixed with tylennol helped, but it did not go away completely until her CLL treatment reached "clinical remission" after about 14 months. Her pain while on watch and wait and during treatment would be in both knees and then jump to both her elbows or hands, etc. It was like arthritis pain and the CLL treatments made it worse, but once we were off the treatments her quality of life returned. Some do not seem to have the migrating pain until they start treatment and many never have it.
My CLL diagnosis was made 23 years ago by a rheumatologist. I had made that appointment due to severe roving joint pain. The rheumatologist discovered that I had a monoclonal kappa light chain cryoglobulin circulating in my blood and did further tests that resulted in my CLL diagnosis. My CLL cells were producing a cold precipitable kappa light chain immunoglobulin that was causing my roving joint pain.
Your husband could ask his doctor if this could be causing his pain. If the doctor decides to check for a cryoglobulin, blood must be collected in a preheated tube (37°C/98.6℉) and and centrifuged at that temperature in order for the test to be accurate.
Roving bone pain can be caused by a number influences, and treating it needs a medical diagnosis. Usually CLL related bone pain is caused by cell crowding in the marrow during progressive disease. Cytokine influence from CLL can also provoke inflammatory responses that ensue bone and joint pain as well as aggravate connective tissue. Diagnosing these conditions as the cause are not common in general practice because the equipment and testing is expensive, trained technicians are focused more on research, and insurance does not cover these costs because the diagnostic is not an approved measure of the disease.
With my study I have found that often with those of us CLL patients experiencing bone and joint pain , when it is recognized and accepted by a general practitioner, they would refer one to a rheumatologist. Hematologists/Oncologists are more focused on the overall disease stage with regard to treatment.
Prior to treatment even as early as when my lymphocyte count was below 15k, I experienced unusual roving bone pain and connective tissue pain caused from inflammation . Before my lymphocyte count reached 50k I was nearly debilitated. I could not walk a mile, could not lift my arms to shoulder height, and I was having trouble bathing and dressing myself. In addition, the pain contributed to my fatigue to the point that I spent about five hours during the day confined to a recliner.
The treating hematologist at that time refused to consider that the CLL may be part of the influence, however, my GP referred me to a rheumatologist who prescribed both oral and topical diclofenac. The diclofenac did provide some short term relief, however, the frequency of the pain progression increased until after I was treated.
It is interesting that shortly after three infusions of Gazyva, nearly all of the pain disappeared and I regained my mobility, stamina, and strength. In discussing the unmeasured phenomenon with the treating oncologist/specialist, it was theorized that I experienced cytokine influenced symptoms.
It should be noted that the symptoms which I describe for myself are more common to those who have advanced Rai stage CLL, and not that common to early stage disease.
I hope you are able to work with a physician to get resolve. Progressing pain and in compassionate care is unacceptable.
That is really interesting. I had degenerative discs. To me the pain was where you would expect it to be, in my back and legs. During surgery the disc broke into pieces.
That is the back problem which has caused me to have instability. The cll was discovered in the really early stage in 2001. Later that year I had the surgery.
I blamed my back issues on the continuing pain but as time went on I realised I had a chronic pain issue. Pain in my bones, ribs and shoulders. Looking back to 2011 after chemo I dont remember the pain being as bad as it is now. I am taking ibrutinib and my numbers are normal. Platelets are ok but a bit low.
I am miserable. Ibrutinib does cause arthralgia. I have had roving pain but at the moment it is worse than ever. I have a swollen finger on my right hand. The joint wont bend properly or take weight. I have pain in the tops of my arms and they feel cold to touch. My shoulder bones are sore. I have had miserable sciatica for several days and I cant stand on the bottom of my right foot. Generally I have all over bone pain.
I was the one who wanted ibrutinib and didnt complain. When the consultant rings I am going to discuss this. I dont want to stop the ibrutinib. It is working. Anne uk
I experienced the same due to the connective tissue aggravation. Before treatment I needed help putting on a coat, because I could not lift my arms. Within 3 treatments with Gazyva I could reach over my head behind my back with both arms and touch my shoulder blades!
Wouldn't it be great if that was the case with everyone?
How long has it been since your treatment? My pain makes me feel sad that I can't do the things I used to do. It actually reminds me that I have this stupid disease. Im sorry I've been struggling emotionally lately.
I discontinued treatment December 12, 2019. I remember well the frustration of progressive decline. Whenever I read about others struggling, I fantasize about their future treatment success.
The degenerative discs present a co-expressed condition, and like most co-expressed conditions, they add to the complexity of defining cause and effect.
I certainly hope you find some relief for the arthralgia.
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What does bone pain feel like?
bone joint and muscle pain
Chest pain in CLL
