early stage pains

[Jess81]

I was told I had early stage cll about 6 months ago after gallbladder surgery. My wbc was high after surgery and they kept me in the hospital an extra 4 days pumping full of antibiotic. Come to find out it was cll. MY hemotolgist says I'm low risk. I have a slightly swollen spleen and some swelling of lymp nodes. I have been a very active person up until 6 months ago started getting a lot of colds and what I thought were allergies. I also started sleeping a lot. since the surgery and being told I had cll I have lots of acke and pain through my body and extreme fatigue. My question is has anyone else have these problem with the early stages of cll.

[Newdawn Administrator]

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

[Jess81 in reply to Newdawn]

My doctor have run numerous blood test. Wbc and lymphocyte are stable. I have been test and I am not anaemic .

spent about 2 months with the same doctor running blood test. vit d levels were good. Good to hear other have this problem because I use to be very active. My last visit with my doc he said he was sorry the he could not say what my tiredness and ackes were from. since then I have lost my job and health care. I was beginning to think it was mental because no doctor would link it to the cll.

[Jess81 in reply to Newdawn]

thanks for the response. My doctor have ran about two months worth of blood work. I am glad to say not anaemic and doctor said blood counts were stable also all vitamins level were good.

The past year and half been fighting cold type of sickness until about 8 months ago were the fatuige was so bad I would sleep for 20 hours on my days off. I was hoping finding the gallbladder was bad would help this but its been about the same. my doctor just seems baffle and not sure there a problem.

this sight has been great knowing that other fight this fatigue helps mentaly.

[jangreen]

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

[AussieNeil Administrator]

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

[Jess81 in reply to AussieNeil]

Thank you Neil for your reply. The conditions you describe are extactly how I feel. My wbc is around 19 and I think my ALC are around 50. My doctor have ran numerous blood test. I know the test my vitamins levels and they were good.

I feel go on days also and when the fatigue hits all I can do to move also. Unfortunately I'm having a hard time convincing my x employer and family this is part of the cll with out the doctor backing.

It helps knowing these issue are part of the cll.

Neil best of luck with you.

[MsLockYourPosts Passed Volunteer]

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

[HappyDave]

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.

[Jess81 in reply to HappyDave]

Thank you Dave.