CLL and extreme sleep problems

Hello, thank you for this invaluable site. I've had CLL (without knowing) since 2004. About a year and a half ago i was finally diagnosed. I have progressed to Stage 1 now, with some physical problems that no other CLLer has! I've been pretty badly fatigues for a year. Several months ago i started sleeping day and night for several weeks--with a few minutes out for basic necessities. (And i had always been a bad sleeper.) I called my oncologist who was not concerned. Then, and now, i sleep until eleven or twelve noon. Every day. I have no choice . I also now have no life--a few hours in early afternoon, and too tired to move, or think.

Sorry to whine, but i'm scared. Is it true that only chemotherapy would cure this fatigue? My numbers are nowhere near to indicating treatment, so i am stuck between nowhere and nowhere. I had hoped for a reasonable life until the inevitable treatment, but this is not a life.

I love this site, and learning so much from all you, who are braver--and more alert!--than i am.

Thank you all, with kindest regards,


16 Replies

  • Welcome Danety,

    My greatest concern reading your account is the line where you say you were virtually sleeping round the clock but your oncologist was 'not concerned!' Well he should be concerned and he should be doing a battery of tests to find out why you're excessively fatigued to the point of sacrificing your life to it! Are you anaemic?

    I'm not sure what tests have been undertaken in terms of vitamin levels generally or possibly underlying issues but they need to be started for you. Especially as you say your levels wouldn't indicate treatment stage at the moment.

    You don't give a great deal of information but at Stage 1 CLL'ers can suffer fatigue to varying degrees but not to the extent of being totally debilitating. It could be many years before you require treatment so in the meantime you urgently need a second opinion from a CLL specialist who will take this matter seriously and investigate thoroughly.

    Had you considered doing this Danety?


  • Newdawn, although i keep getting sort of cold shouldered, and there is probably nothing to be done with fatigue and sleep. i am right now calling my (new) oncologist! Thank you for your expertise! I'll update--whenever i can wake up enough, lol.

    Kindest Regards,


  • Well I wish you luck Danety. Please don't accept a state of permanent and life depriving fatigue as a natural consequence of early stage CLL. It's true that many people do suffer severe fatigue even at early stages but the extent to which you have been affected is extreme! Naturally I don't know whether you may have other physical health conditions, sleep apnoea or indeed depression because all can cause these symptoms.

    I hope your new oncologist can assist you with this though it sounds as if a specialist haematologist in CLL may be a better option than a general oncologist.

    Best of luck to you,


  • You give me hope, Newdawn. Mostly, doctors just tell one not to bother i slink away.

  • Hi Danety

    You might consider discussing this with your GP as well, perhaps a sleep study is in order. Many think sleep studies only look at apnea, but in fact they monitor many sleep functions of the brain... and the results can lead to a better understand of your problem...


  • Chris--! Thank you. I've had sleep apnea for a long time. I will follow up on this.


  • One more thing... have your B12, folate and VitD levels checked... I get monthly B12 shots and they have made a difference to my level of fatigue... I was also on antidepressents for years... since the B12 shots I have been off them for the past 7 years...

    Supplementing B12 by diet, if often a waste of time, get tested and follow your doctors recommendations.

    Here is an excellent website for all lab tests... this page discusses IF intrinsic factor... if your B12 is low this may be the reason... no IF...

  • Thank you very much. This makes sense!


  • I had similar fatigue problems, along with day sweats, joint and muscle pain, etc. Because I was symptomatic, I was able to seek treatment even though my wbc numbers weren't drastically high.

    See a CLL expert and have a FISH test done to get information on your cytogenetic so. This will determine your treatment. I am 17p deleted with p53 mutation,, which makes me chemo-resistant and have a more aggressive cancer. I have been on ibrutinib (IMBRUVICA) and my fatigue has improved, no muscle and joint aches, and no more day sweats.

  • Danety

    Don't slink away from your doctors!

    Take control of your condition insist they listen to you!

    Your treatment even though you are not receiving meds should be holistic it should take into account your concerns and worries as well as any symptoms you may have.

    I agree that your fatigue seems extreme so make them listen don't take NO for an answer.

    Tell them your fellow CLLers insist they do their job!

    Go for it!


  • I would bring it up with your GP. it's possible your sleeping is a symptom of something else like a thyroid condition. Best wishes.

  • The regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for re-activation of usual childhood diseases, so here it is again.

    "Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue."

    We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on immunodeficiency


    and his comments on fatigue:


    Both times my CLL progressed I got severe fatigue and a reactivation of a childhood disease that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.

    I also had Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time. When I was treated in 2010 with Rituxan monotherapy the fatigue problems decreased dramatically but the cough took months for the symptoms to slowly subside and the coughing disturbed my sleep some nights adding back some fatigue.

    In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed me entirely.

    So is it CLL and an opportunistic infection?

    Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

    Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.

    And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

    Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications.

    Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

  • Thank you, lenkeck, for your excellent list of possible reasons. I've been furiously writing them down, as i have a quick appt with my GP in an hour!

    With kind regards,


  • Very helpful. Thanks!

  • Sorry to hear of your extreme sleeping. I also was fobbed off by being told that my extreme fatigue and lethargy was not due to CLL. As it turned out I was also receiving medication for essential hypertension (life long high blood pressure) and this was partially to blame. However I think with all chronic diseases, the cumulative effect of them does not do us any good, and its a never ending downward spiral. As the various medics from their separate departments never seem to communicate about a 'shared' patient, there's very little hope to really get to the bottom of our various conditions.

    I am sleeping as soon as I sit down and open a book or switch the tv on!

    Good luck!

  • Make sure you rule out other possible problems like diabetes or thyroid issues. You might want to discuss this with your PCP. Not to downplay the fatigue many of us have with CLL.

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