CLL patient for 4 years with 22 wbc and on w&w I visited my Oncologist last Tuesday and explained that I am experiencing a continuous high level of body pain hoping that I would receive something other than take some Advil. Not sure if they understand that this is a daily pain and I cannot be expected to be hooked on Advil for the rest of my life. I will be looking for a second opinion but thought I would reach out to see if anyone else Is having these same challenges and have any suggestions as to help with the pain (other than prayer) Thanks and God Bless
Certainty, it may be time for you to see a rheumatologist to get your joint/bone pain sorted. You seem to have had this pain for several years, maybe even before your CLL diagnosis. Osteoarthritis can be very painful as we age.
If you have a Primary Care Dr. that you see regularly, ask for a referral to a Rheumatologist where you can get the pain sorted and hopefully find ways to allay the pain. Sometimes physical therapy can help (it has helped me). The therapy is helpful to get us moving in ways that keep our muscles free to move as they are supposed to move.
While we often think we can't move because of the pain, sometimes we have the pain because we do not move enough or correctly.
I do hope you get the care you need to sort the situation and begin to find relief.
Hello certainty, I am sorry you are having pain and that you are not getting answers.
A "continuous level of high body pain" is a very non specific complaint. Although I am no expert, it does not sound like something related to your cll. We read about people on here with fatigue that might well be cll related. And a spleen swollen with cll cells can cause localized discomfort as well can some swollen nodes.
Here are common cll symptoms listed, which do not include anything that sounds like high body pain:
Enlarged, but painless, lymph nodes
Fatigue
Fever
Pain in the upper left portion of the abdomen, which may be caused by an enlarged spleen
Your oncologist might seem non responsive because he sees your symptoms as being unrelated to your cll.
To treat your pain best you need to know the source of your pain. You might consider getting a work up by a physiatrist or even a rhuematologist to see what is causing your pain. Then you can consider treatment options. The more descriptive and specific you can be about your pain, the better chance you have of getting the right work up. Good luck to you.
not to belabor the obvious but ibuprofen(advil) is probably the safest and useful drug to use. it's an anti inflammatory and is used worldwide for arthritis. You do not become 'addicted' to it. If you stop it the anti-inflammatory is stopped and arthritis pain returns. it can cause excess stomach acids but what kind of drug did you have in mind?
Definitely agree you need to see a rhuematologist. Sounds like what my mom had, polymyalgia. There are so many conditions that give pain like you described. Does not sound like it's CLL related.
Lupus, Lyme, fibromyalgia etc.
Altho it probably isn't your CLL, I am surprised your hematologist didn't tell you to see a specialist to get tested for conditions that are giving you pain. I would consider getting another hematologist. Sounds like they don't communicate well. I was concerned about a problem I had and my oncologist said it was not CLL related and made some suggestions as to which doctor would be best to see. She has my best interest and takes good care of me. You want a good relationship with your hematologist. You have just started this journey. 💕
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