Hi
I'm recently diagnosed with CLL. Prior to being diagnosed I had attributed my joint pain (hips, knees, elbows) to jogging for 40 years, and other regular excercise. Could the joint pain be from CLL?? I'm also experiencing discomfort in my wrist and hand joints. Prior to my diagnosis I thought this was the result of overuse (computers, ipads, smartphones). My CLL is in the early stages...at least as far as WB and AL counts.
Thanks in advance for sharing your experience.
Ned
Hi Ned
Never say never... CLL does a number on our immune systems, how it manifests varies...
I suggest a referal to a rheumatologist, they would be able to assess your situation... certainly autoimmune problems are seen in CLL.
I have iPad finger... a very painful right index finger, from tapping on the screen... I now use a stylus and while the finger doesn't hurt so much anymore I now have triggered carpal tunnel syndrome... 😳
Never ends...
~chris
Hi Ned and Chris
I was thinking the same thing myself. I had an operation a good while ago on one thumb for trigger thumb, the other responded to a steroid injection.
A few weeks ago I had a steroid injection into my middle finger which seemed to have worked, however it is definitely back and very painful. Sooner or later I will have to book in for the op. Here was I thinking when is enough enough which is why I had to respond to Ned's post.
Not as awful as what you guys are dealing with though. On the funny side I need to remember to keep my hand down as it does look as if I am giving the finger 🙄.
Bubnjay1
Hello Ned and thanks for sharing.
I am now into my seventh year of watch and wait. I too suffer from joint pain. I also get occasional severe cramps in my legs. My doctor prescribed monthly vitamin B12 injections for the cramps. These are given in alternate arms. After a short while my left shoulder froze. It was so painful I could not lift my arm very high. The hospital physio gave me a course of painful exercises to help unfreeze it. After another short while my right shoulder froze. It was then that I figured that the problem was the B12 injections so I stopped going for them and the problem went away. Shortly after that I started getting severe pain at the base of both thumbs. The doctor initially prescribed paracetamol!! This progressed to strong painkillers, then cortisone injections. The cortisone worked for about three months. Within the last year I have had the trapezium bone removed from each hand which seems to have solved the problem. But was it also caused by the B12 injections? Who knows and the doctors laugh at me when I suggest it.
I do not know whether my CLL is linked to joint pain or not. It does not seem to matter what I discuss with my haematologist he always says that whatever it is it is not linked to CLL. At the last consultation he said I do not have to attend the annual checkup if I don`t want to. He has never examined me. So the whole episode leaves me very confused.
Excess pain is how they discovered I had CLL. I asked to be referred to a rheumatologist because my physio of 20 years who treats me for old car accident woes said that I shouldn't hurt so much when he manipulated me. I do a lot of yoga and I am in not bad shape overall. Had to wait 9 months to see a rheumatologist and she got the Sjogrens blood tests back and said there were cancer cells in the blood and sent me to the haematologist. Turns out no Sjogrens which they did think I had. I believe my joint pain is exacerbated by CLL. If you think about it CLL is is the bone marrow and I was in a bad accident which left me with various bone issues and instabilities and as I age the two together probably give me more pain. Ned you may be having something similar.
Hi Ned,
Welcome to the CLL Support Association website. So nice to meet you, but wishing it would be under more pleasant circumstances.
I was diagnosed with CLL in 2015. I experience joint pain, but mine was diagnosed as arthritis prior to my CLL. I know this doesn't help your question, but it may give you some direction. I hope that you find the cause of your pain soon.
Blessings to you~~Always look up and keep a positive attitude.
Faye Ander
I too have joint pain in wrists and hands. I thought perhaps it was the FCR I had. I saw a rheumatologist to check for lupus and other autoimmune diseases and was fine. So, here is what I did. Acupuncture. And it has helped so much that I need to get back and do it again. In answer to your question, who knows if it is our CLL, but you are the first I have heard that has the exact pain I do. So, I bet it is.
Hi Ned,
Diagnosed with CLL in 7/2015 and I, too, have joint pain. I was diagnosed with osteoarthritis long before the CLL, but I am finding that my arthritis is more painful these days and appearing in more joints. I see a rheumatologist every 6 months and I have needed the injections last 2 visits - which I had never needed before. I never thought about the connection until your post; however, since my bone marrow is involved it does kind of make sense that my arthritis could be reacting to the CLL. I hope you can find comfort for your aching joints and answers to your question. I will be asking my dr. on my next visit.
Best wishes to you moving forward!
Susan
I did not have joint pain till after I started Imbruvica. Then it hit just about every joint in my body. My rheumatologist put me on Plaquenil, she said it was used for malaria but it works well on CLL patients. I feel wonderful and have a German Shepard dog that I walk daily for 11/2 miles. Good luck!
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