Cll and painful joints, muscles : I was told... - CLL Support

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Cll and painful joints, muscles

Nuisance1 profile image
Nuisance1

I was told that I have CLL 15 months ago. I have been tired. I find bruising on my legs and stomach in the mornings. Now my left elbow/arm hurts when I either bend it or try ro straighten it. I have noticed that my left ankle and knee are painful at times. What I do to hrlp relieve the oain and discomfort?

I am also a kindey cancer survivor. I had cleal cell carcinoma, self contained. I had a partial left nephrectomy 10 years ago.

5 Replies

Hi Nu

I am in the same situation and see a rheumatologist and endocrinologist and to say the least its frustrating as no one can find and medical reason for the pain or fatigue

I also spend a lot of time with the dermatologist with skin issues

For me its so abnormal as in April 2016 i was really starting to have issues but i was able to work around then and keep doing Trail running events up to 50 miles until April 2017 when i did my last race and have been on a time out ever since

I can just make it through my job functions and this requires 800 to 1200 Mg of Advil a day to keep the pain at a tolerable level

At this point i have a new appointment with Dr Rai in July and while there not necessarily going to start treatment at 62 i am not prepared to spend the rest of my life in such a limited state as my life is pretty much getting through a work week and recovering

I have been on Ibrutinib for 19 months. Muscle and joint pain varies from 6-7 on the pain scale to 9-10, worse at night but can be very painful during the day. Movement helps somewhat. No medication makes any difference. I am not willing to take narcotics. Saw hem/onc. MD yesterday. He wondered if fibromyalgia and thinks possible Cymbalta or Gavapentin might help. Anyone with experience with either of these options? No easy fix. Hope you feel better soon Nuisance 1.

I’m sorry for all you have been through. I’m just an amateur here but I’ve had CLL for 5 years and I’m on watch and wait and have had joint pain. I find that a gluten free, dairy free, sugar free diet combined with exercise makes a huge difference in relieving my symptoms. Perhaps it would help you too?

Best of health to you,

Nonna

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Nuisanse,

I was diagnosed 16 months ago, blood numbers not that bad but like many many here I suffer from extreme fatigue on a regular basis. The doctors will ignore this, tell you "take a walk, it is not related to CLL or You are depressed" You can mostly ignore those comments...the fatigue is related to the various cytokines and other complicated chemistry stuff. It is well understood at the top tier places like Dana Farber and MDA. The bad news is there is not much to be done about it.

I don't have any real joint pain (minor issue with elbows if I rest on my side) but one of the questions my hematolist ALWAYS asks me when I see her is if I am having any type of joint issues or pain. It is something you should discuss with your doctors either next time you go...or if it i serious, right now.

Scott USA/Maine

Thank you I do plan on talking to my Doc. I did tell him about the bruising, 21 new bruises over a weekend. Had blood drawn and had low numbers. But I don't know what numbers to worry about and how low to start getting concerned.

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