It's not advice I'm giving I'm afraid - just empathy. I too was recently diagnosed with CLL and am told I'm in early stages, but get overwhelmingly tired every afternoon and have to sleep. I'm usually OK in mornings. My doctor said that CLL doesn't usually cause this, but that it might do for some people. So, I try to schedule an afternoon sleep into my daily routine. Big nuisance but it makes a big difference.

around 2 i find myslef nodding off at my desk...lol. i start treatment on monday.... see how much better i feel in 2-weeks.

Similar problem, but I think it is due to other stuff. Hard to get a doctor to pay attention to fatigue in 59 y.o. woman. I feel better since I go to the gym. I try to go to bed early a couple nites a week (9ish) as the sleep before midnite is deeper. Your post is so general hard to figure. Try to support our health in general. The CLL is pretty much just brewing in the early stage, not supposed to effect us much. No way for me to nap as I work full time.

Hi quiltr,

Yes it is normal to have fatigue with CLL.Dr. Keating at MD Anderson says it is all part of it.I wish more oncologists would acknowledge this.After treatment sadly,the fatigue is worse.I had to finally start taking Provigil or I fall asleep during the day and have to take like 3 naps.The Provigil helps but I still don't have any energy and I try to only take it on days I just have to.I don't think you need anything like that yet though.Just when your body tells you to rest...don't fight it..if you can rest..just take a nap.

God Bless,
Thoughts & Prayers,
Debbie Light
www.cllcfriends.com

I am a 58 yr. old woman and was recently diagnosed with CLL. I too have overwhelming tiredness usually in the afternoons. I also have alot of pain that I remember describing to the doctor as feeling like it was in the bone, esp. my left hip. I thought I had a spur in the joint it hurt so much. i also have severe neuropathy for the past 10 years and was not a diabetic till last year. I just take oral med for diabetes. I also wondered if this pain is related to CLL. Anyone else experiencing this??

I also have fatigue (59 yo) and pain in my right hip. One of the many articles I have read talks about when the bone marrow is producing so many WBC it actually expands and causes the periosteum (the lining of the bone to stretch and that causes pain. Does anyone else know about this?
Inika

I am so glad I found this site..I was dx in 2004 age 59 with CLL, 31,000 last checkup end of 2010 was 49,000. I had 0 symptoms of anything until about a year ago. I now experience extreme fatigue and intense pain in the right hip. This will last 1-2 weeks then for several weeks I feel more energetic and no pain. While I am sad anyone has this I am glad to know I am not the only one with the fatigue and pain.

Reading the replies I was surprised to read about the pain in right hip. I have the same issue. The fatigue is overlooked by doctors too.
I work full time and take a nap on my lunch hour to get thru days.
Set alarm on my cell phone to wake up !

hello,
I have been told i have CLL,I WAS TOLD,cannot delete my comments,i was told on the 21/04/11,to be honest,i cannot remember much of what was said to me,my wife has a appointment to see my doctor to explain my condition to her,here in the UK we are graded from A upwards,A being the watch and wait ,what caught my eye on this page was the mention of hip pain,i have the same pain in my right hip and my right shoulder,it is so much worse when sleeping on it,i have been told in the past by my doctor that it is a inflamed fluid sac in between the hip bone ,but after reading your comments it makes one wonder,it would be of interest to me if anyone else has this pain in the shoulder as well as the hip
.Kind Regards
Brian

I was done with treatment Dec 2010. Six treatments every 3 weeks. Still to this day I have fatigue especially in my thighs. I had stage 4 CLL and didn't know it. Suffered chills and sweats during the summer last year.
The cancer doctor says I should be over any side effects of the chemo. The cancer is in remission and things are back to normal. I told him I still feel the same aches in my body as after my first treatment. Oh you must have a infection or a virus. I have neither. My doctor just perscribed vitamins. But every day it gets better. By the end of the summer I hope I'll be completely over the fatigue and aches. Maybe I'm just an odd case.

hi i also have cll also have hep c try to make it to work everyday but it it is getting much tougher as time gos by. its amazing to me that the people you work with everyday for damn near 16 years just dont understand that i get tired and need a break now and then i came back to work after 2 years out on ssdi on my own accord not because my doctors told me to . like they say the hours are great but the pay sucks. anyhow after being back for a little over a year now im thinking very seriously about going back out afford it or not . dont get me wrong not looking for sympathy but i need a break thanks for letting me vent good luck to all ..

I am a 47 year old male,married 23 years with 2 grown bys and 2 grand children.I was also diagnosed recently with CLL. My WBC is 20,000 and I am also having trouble with fatigue. I am still working but it is becoming more difficult because I seem to get so tired. I am Stage 0 on the wait and watch. My doctor says I am approx, 5 years from chemo. I guess I am like you my doctors says that the tired feeling is not due to CLL. All I know is that I never felt tired like this before.

Hi, I am a 56 yo wife and mother of 3 grown children (youngest starts college in the fall). I was diagnosed with CLL a few weeks ago. I also have problems with extreme fatigue, especially in the afternoon; and I also had right hip pain last summer (before being diagnosed) and was prescribed physical therapy, which helped. I do also have right shoulder pain that seems to come and go. I am still in the diagnosis phase in terms of treatment...waiting on FISH results. But CT does show some lymph involvement, so will probably start some sort of treatment soon. It's nice to have others to talk to about this.

I was diagnosed with Cll in January 2011. My oncologist says I am in stage 2. Still "watch and wait". This was very hard for my family to understand in the beginning until I had a second opinion at University of Tenn. Cancer Center. I have swollen lymph nodes in the neck area, underarms and groin. My blood work is done very three months and in June was still good according to the oncologist. I too have fatigue in the afternoons and pain in my right hip area. Other than that I am functioning normally. I thank God for every good day that I have and will try to deal with chemo when I have to face it. It is good to hear from others that fatigue and some pain are normal as my doctor also tells me the CLL is not causing this. Maybe doctors should be on this blog.

I was diagnosed Stage 0 in May, 2011. I feel tired sometimes, but I believe it is really fear and anxiety...it is hard to wrap my brain around this. I will have my first blood draw since initial diagnosis in two weeks. I want to get the fear behind me and move on. I am going to Camp Bluebird in Oct...can't wait. I am in a support group and have met a few people with CLL. It is very helpful to have someone who knows what you are going through. I hope to meet others on line as well. Support is the best we can receive.