early stage pains

A warm welcome Jess and glad you found us.

Fatigue seems to be a very common feature of CLL and not necessarily dependent on the stage people are. It's badly understood and not widely researched I'm afraid with some medics refusing to believe the link fully exists. It's clear from the wealth of evidence you'll find on here that this community find it to be a significant issue.

You say you're very early stage CLL Jess. Are you able to give an indication of your blood results presently and do they appear to be fairly stable? Your lymphocyte level is particularly significant. Have you been tested for anaemia in an attempt to understand your excessive fatigue levels?

Sometimes we have pre-existing conditions which we attribute to CLL but they have other medical origins. Did you have these aches and pains previously or are they a recent problem since dx? I'm wondering what your doctor attributes them to and if he's done any additional testing particularly in relation to your Vit D levels.

Please feel free to ask any questions and you'll find a tremendous amount of support and understanding on this site. Any additional information you feel able to provide will help people to advise you and share their experiences.

Regards,

Newdawn

Hi sorry that you have joined the club no one wants to join but about pain. Yes I had this both in the beginning and now after treatment. Painkillers seem to be the only option. Try to pace yourself don't try doing too much in any one day and be kind to yourself. If you need an afternoon rest or sleep then go ahead and have one. Best wishes

Jess, are your aches and pains similar to what you get with the flu? I'm wondering if a fair amount of what you are going through is just due to your body struggling to constantly fight off infections. Do you know if you have a raised body temperature - perhaps for just part of the day? I went through a similar experience when my immunity went into free fall because of my CLL. It took me a long time to get out of that situation and I did it by absolutely minimising my exposure to people and other avenues of infection.

How high is your WBC (or more specifically, what are your Absolute Lymphocyte Counts (ALC). which may be called Lymphs on your blood test results and your Absolute Neutrophil Count - ANC (Neuts). There are probably two figures, a percentage (ignore) and the absolute (actual) count. We want the absolute number, not the percentage.

If your lymphocyte count is high (say over 50) then the automated blood test counting can miscount enough lymphocytes as neutrophils to mislead your doctor into thinking that your immunity is better than it actually is.

Also, ask your doctor to check your vitamin D and immunglobulin/antibody levels. It's called the "Serum Protein Panel test" in Australia. Your immunoglobulin (IgA, IgG and IgM) test results may also be OK and you can still have constant infections dragging you down and causing that extreme fatigue.

It wasn't until after I minimised my infection risk AND boosted my vitamin D into the normal range, that I was able to lessen my occurrences of extreme fatigue. The fatigue would hit suddenly and it was all I could to to drag myself to bed for a rest. Some days I'd feel really good and do a bit more than usual and that would wipe me out for a couple of days afterwards.

Hope that helps you find an answer,

Neil

Jess - In addition to what Neil has said, ask to have your vitamin B12 checked. I was very surprised to find that both my D and B12 were very low, as was my IgG. I can't document any cause and effect, but since getting these numbers into healthier ranges my joint and bone pain have lessened and I do not live with constant infections. Are you able to have a consult with a doctor who deals with a lot of CLL patients?

Pat

Hi

Glad to hear that you are low risk.

Tiredness and fatigue are part and parcel of this condition. Can I respectfully suggest you go with the flow. Be busy when you feel able and take a rest when you feel tired. A lie in or a nap can make all the difference and fighting the urge to rest and sleep is not always productive.

Aches and pains go with the territory as well. Ibrufen helps when it's absolutely necessary.

Some days I feel really good and some days I am tired. I am in a great position of being able tobe flexible in what I do and when I do it night everyone has this freedom.

Regards

Dave.