Tired

[BlueGillfisherman]

I was diagnosed with CLL about two years ago. I really do not have any outward symptoms but I am usually always tired. Any suggestions

[Tommays56]

Hi Blue

Its something that affects a large amount of people with no current good solution if they cannot find and issue with your health other than CLL

I was just tested for everything possible 30 days ago and will see my CLL Doctor Friday but as nothing really stands out in the blood work i will update this post if He has anything to try

Tom

[Newcastle1962 in reply to Tommays56]

Hi im the same. No other symptoms. Diagnosed 1 year ago. My fatugue never goes away. I could run a marathon or lie in bed all day and i would feel exactly the same. I do find exercise does help and i try and walk a lot. Its very hard as exercise is the last thing that i would choose given how bad i feel .

[Awksom in reply to Newcastle1962]

Very silimar for me. Excercise helps some, I try to walk 2 miles per day but still feel fatigued most of the time. Naps do not help if at all. Strange is that I feel my best before going to bed but not during the day. I'm WandW for18 months so far, 13q deleted.

[DaleFL in reply to Awksom]

I am fatigued all the time. The only time I ever have energy is before going to bed.

[Superdad3]

Hi Blue,

I started feeling that way about a year ago before I was diagnosed this july, it would come and go where I have more energy and at times feel pretty tired. Usually hits me in the afternoon then I perk up after dinner before going to bed. I have no other symptoms and believe its probably my immune system working harder. Its a little frustrating when I do feel energize its so easy to forget about this situation we are all in and when I'm tired it brings it back into perspective. I am taking Vitamin B,D,C plus fish oil and egcg, not sure if it really helping or not but I feel like I am at least trying something.

[DaleFL]

I was diagnosed with CLL earlier this year. I experience significant fatigue, although my blood counts do not require treatment. I feel like starting treatment to see if it will help fatigue. I understand the medications can cause fatigue. But I want to do something to improve my life. It is so frustrating. Has anyone started treatment for the reason of significant fatigue alone?

[flossieC in reply to DaleFL]

Hi there I have worsening fatigue too. Been on W & W for fourteen years without treatment...my Dr's don't really want to treat for fatigue therefore I've had blood taken shows WBC up very marginally. Registrar testing for vitamin, mineral deficiencies, thyroid etc to rule anything else out before I see him in November. I have learned I just have to pace myself, I've had plenty of practice! Frustrating if you've had a busy career but hey it's do-able! best regards

[Newcastle1962 in reply to DaleFL]

I understand where you are coming from. I cant imagine feeling like i do for the next 10years if treatment not needed. Its a balance between quality of life. I am able to do a lot but often i just cannot summon up the energy!

[migirlusa in reply to DaleFL]

I have not started but my oncologist told me she will likely start me on treatment before the first of the year. She said the treatment should stop the fatigue.

[DaleFL in reply to migirlusa]

Is fatigue the sole reason you are going to start treatment? I am just curious if you have other symptoms and/or physical indications (e.g., low platelet or hemoglobin counts).

[migirlusa in reply to DaleFL]

WBC 52.1, platelet count 144, absolute lymphocytes 46.89. Lymph nodes are increasing. We may decide against treatment. We were trying to come up with options for the fatigue.

[J-girl in reply to DaleFL]

I will say that I had significant fatigue where sometimes taking a shower was my accomplishment for the day. My husband and I had a medical office that we closed because I could no longer be his office manager. He went with me to my Oncologist planning on asking him regarding starting treatment, Ritalin or something for the fatigue. He actually mentioned chronic fatigue syndrome to me so that was really frustrating. A month later my counts had significant changes and have now started treatment. I went from a borderline stage 2-3 to a full stage 3.

[Safta]

I was diagnosed 6 years ago and I heartily echo everything written above. The trick is to accept it and pace your life accordingly. Easier said than done.

[Tommays56]

So 10,000 dollars worth of blood work later i am a very health CLL patient who's fatigue cant be explained or treated

I just know healthy Toms ALC was 1.4 and tired Toms is 16 today

Tom

[Hidden]

I was the same. It really makes a difference for me when I eat healthy, get enough sleep, exercise and reduce stress. Also I paced my days a little slower and more relaxed.

[benmarto]

This is an interesting era in treatment whereby one has to be quite sick to merit chemotherapy and yet immunotherapy drugs are only available for those who are resistant. The latter has minimal side effects. You might get yourself into a clinical trial with ibrutinib or, better yet, venetoclax. I am taking the latter and my fatigue resolved completely. In the coming years I imagine that immunotherapy will be available to everyone so that moderate to severe fatigue will qualify for very effective treatment.

[DaleFL in reply to benmarto]

Did you have other indications for treatment? Or was the severe fatigue the sole reason for it?

[benmarto in reply to DaleFL]

Only the fatigue. While fatigue alone would generally not warrant FCR or the equivalent, it may qualify for entry into a clinical trial if it is relatively severe and significantly impacts quality of life. Are you in the US or UK? In the US one can look at clinical trials.gov and scan for clinical trials based on your age, location, etc. Happy to help if I can.

[DaleFL in reply to benmarto]

I am in the US. I will looking into the clinical trials. Thanks.

[Tommays56 in reply to benmarto]

Yes that is right were i am stuck quality of life bad with perfect Fish for a good FCR outcome and have to wait until until i am in much worse shape and less likely to tolerate it

[migirlusa in reply to benmarto]

Thank you this is very helpful.

[holly2]

Hello BlueGillfisherman, it has made me tired typing your name! Having struggled with fatigue for over 10 years now since my diagnosis and subsequent treatment, for me, I have just had to use loads of determination if I want to get things done. My worst time of day is just after lunch. If I am not careful I feel so sleepy and lethargic. BUT, if I plan what I want to do and build up determination to do it, I usually overcome the feelings of fatigue. As others have said, exercise and getting out walking in the fresh air, or even jumping up and down on the spot in the kitchen waiting for the kettle to boil, works for me!

Ensuring I go to bed with the right mindset helps me too. Fatigue is doubly bad the day after a night of insomnia! So no using the computer or watching violent TV programmes just before bedtime! No caffeine drinks in the afternoon. No heavy meals late in the evening.... etc.

So, also assuming you have a healthy diet and are not short on iron and vitamins, there is no magic answer to beating fatigue unfortunately, just ways to try and mitigate it and live with it.

All the best, Holly.

[BlueGillfisherman in reply to holly2]

Thanks Holly

[jettyguy1]

Hi Bluegill. I have a moderately aggressive version of unmutated CLL. Upon diagnosis in Jan. 2016 I weighed 185 pounds,today due to doing a macrobiotic diet and exercising ,I have gotten back to a fighting trim of 138lbs. At diagnosis ,I couldn't complete a full sentence without coughing and I felt very fatigued. Now 20 months later I am jogging or walking 2-3 miles, 5x a week. I gave up SUGAR,MEAT,Poultry and junky processed foods. I can say that from my personal experience and point of view,the radical change of diet and the exercise really helped and I have absolutely O fatigue. What happens when you get rid of high blood pressure,high cholesterol,horrible liver function, diverticular disease, high glucose and acid reflux as I did and you drop the extra weight,sometimes your body says"HEY..this feels pretty good and I am not stressing with the other typical "OLD AGE" related problems. I don't know if it's a case of relieving co-morbidities and the body just functions better or it's that your metabolism gets a boost,but I am going all day long ,18hours a day and thank GOD no CLL fatigue. So exercise in my experience pays dividends,as does having a wholesome diet. Incidentally,I surf cast 2-3x a week and do a lot of walking over boulders to get to the fish...I use bluegills as teasers and they rock.

[Jacksc06]

Hi. I would say Eat well, sleep well & exercise in moderation. Golden rule - don't overdue it.

[ladyprescott]

Same tired feeling. Some days after sleeping for nine hours I get up and could go back to bed. I find staying busy, pushing myself, and also going to the gym to run the treadmill for 30/40 minutes works well for me even if I don't want to do it, I go. Also, and here's where I think I see some difference. I began taking a chelated iron tablet 28 mg once a day in the morning. For those of you in the States I bought it at Sprouts, their brand. Since starting it I haven't missed a day. Do I still get tired, yes, and I find I do have more energy in the evening, then I can feel it coming on, I just have to go to bed.