betty1957

[betty1957]

Hi everyone I was diagnosed with CLL in July, just want to know if it's normal to have extreme exhaustion and aching bones all the time, i take folic acid & vitamins. I sleep 7 or 8 hrs a night but wake up exhausted.

[Jojobblom]

Yes I'm really tired too. Thats a symptom that lead to my diagnosis.

[Ghounds]

Welcome Betty, sorry you need to be here! You will find many posts here about fatigue, yes it is normal to a greater or lesser extent. Unrefreshing sleep can also be an issue.

[Shepherd777]

Do you have arthritis? If you do, the CLL tends to magnify the roaming aches and pains. As for the exhaustion, it does come with the CLL territory. Tylenol and tramadol will help with the aches and regular sleep patterns will help, but not remove all the exhaustion you feel. At some point CLL treatments may do the same or better than pain killers.

[betty1957 in reply to Shepherd777]

Hi Knotagoat I live in Scotland & we don't get the tablets you mentioned, my doctor prescribed some vitamins but there not helping much would just like to get through a day without feeling exhausted.

[Ellieoak]

Do you have sleep apnea? I was diagnosed with that and my exhaustion got much better since I use the machine. Stay safe.

[betty1957 in reply to Ellieoak]

I'm beginning to think I may have sleep apnea.

[Ellieoak in reply to betty1957]

Hi Betty. If it’s something that you are thinking about go get checked. Your GP can refer you. It took me about 3 was to get use to wearing it but since I’ve gotten it I have felt so much better. Good luck.

[Eric70]

The answer to your question is a definite yes. I was like this for about 6 years or more before and after diagnosis. I had Chemo 3 years ago and still have days when I am tired from morning till night, even though I'm in remission. Yet in between I am perfectly fine. What I find strange is that I can be so tired one day and full of beans the next. Many years ago Leukaemia was known as 'Tired Blood'

[mrsjsmith]

Hi Betty,

Pre diagnosis I didn’t have bone pain, but I was exhausted. I could check back to the day I knew something was seriously wrong. I was on a bus journey in South London and by mistake I got off a stop too soon. I looked up the road and could see where I wanted to get to but I was so tired I couldn’t walk but had to wait for the next bus.

Hopefully it will improve soon, but be guided by your body and have a nap in the afternoon if it helps.

Colette

[ClassyLady3]

I also have the exhaustion daily and the bone pain. Weather seems to bring increased discomfort. Please continue to read the posts especially those about some exercise, and nutrition and other information posted by the admin individuals. Listen to your body and pace your activity, that helps. Learning to relax while in pain helped me as well as distractions like reading a book or listening to quiet music and a good cup of herbal tea. Best wishes

[Hectanooga]

Yes and yes!

[Cllsller]

Sadly the answer is yes, at least for me.

[Bowie1957]

Betty,

You have not mentioned anything about any blood test you must have had and how advanced is you CLL. Do you have your results available to share?? Thx

[betty1957 in reply to Bowie1957]

Hi Bowie 1957 I don't know anything about my bloods as I didn't think to ask when I saw my consultant, I'm new to all this & feel very insecure, I go back to hospital in October.

[Bowie1957 in reply to betty1957]

Most of all please do not panic. we all went through the same state of mind early on when we received the news. Thanks to this site and educating ourselves we managed over time to overcome our fears and effect a major change to our lifestyle to adjust. CLL is now more of a manageable desease specially with progress on novelty drugs as an alternative to traditional chemo and radiation. My doctor has told me that I will die one day, but not because of CLL. I have been on Ibrutinib for about 8 months now with very little side effects. My numbers are great now and I am responding extremely well to medications. Yes, early on and before starting treatment I felt fatigued and sometimes pain in the joints and bones; please remember the psychological aspect of CLL, that once we have it we try to blame it for everything wrong we feel about our bodies. So, you will need to trust your specialist, and in the state of treatment these days as there is a light at the end of the tunnel. It is treatable, and hopefully you won’t need to start treatment for a long time. However, if you need to start treatment, it will be ok. Trust me, I am No longer obsessed about it as I was at the beginning. I am enjoying life much better than before. Remember that life is what you make it out to be. Take care and keep me updated. Best of luck and warmest regards.

[mrsjsmith]

Betty,

Please try not to worry, we were all new to this once and I certainly didn’t ask about my bloods, in fact my mind often went blank. Try to write some questions down in advance. I am not sure if you will be allowed to bring someone with you by October ? One of my stepdaughters would come to some appointments with me and make notes. You should be getting copies of letters sent to your GP, if not check with reception when you go again, and those letters should have the basics of your blood tests.

Regards

Colette

[Neciaed1]

I’m 73 and work full time but I take a nap every day when I get home. I’m not going to let CLL define my life. I still have a long bucket list. Good luck adjusting to your new normal 💕

[DoriZett]

Sorry you are navigating this diagnosis in the middle of a pandemic Betty. Just adds to the confusion and stress. I was diagnosed at age 53 and had extreme fatigue. It improved some with treatment but is still my chief complaint. I have had to prioritize and alter my life and schedule some. The hardest lesson for me is to slow down and rest. Wishing you the best.