Should I try harder to just PUSH THROUGH this fatigue and do chores, run errands, complete personal business, do self care etc? I literally can barely get out of bed. My daughter thinks I am lazy and are relationship has become very strained - she has ‘signed off’ on helping me.
I will be participating in clinical trial fairly soon (alone), but have SO much that needs done before then. I am looking into hiring help.
Do you know if your fatigue is caused by anemia, which is sometimes part of the CLL package for some of us? If so, I would not try to "push through" it. If your fatigue doesn't seem to have a biological cause other than the CLL itself, there is thinking that general CLL fatigue is due to excessive cytokine release. And that does seem to improve if one is active rather than inactive.
Good luck to you. It sounds like a very difficult time. I hope the trial gives you some good results!
kim
I do not have anemia but paraneoplastic syndrome associated with CLL where symptoms are greater than numbers reflect. My CLL numbers are quite good. I have no nodes. Slightly enlarged spleen. Just MAJOR fatigue with other causes ruled out.
I don’t know how to answer that but I would look at my last H/H count or hemoglobin and hematocrit. I think 10 for hemoglobin is getting low. I would also make sure you don’t have an Fe deficiency on top of the anemia due to CLL. When was the last time your iron was checked. But I would plot your H/H in a graph and see if it’s going down and how fast..
I would also get a sensor for under your mattress and see how much you are actually sleeping at night. There is an app for your phone to track that.
I hope you find some relief soon.
By the way that’s a sweet looking Kitty!
Well as you know, extreme fatigue alone is now considered a reason for starting treatment. Before it was not. So it does sound like you're doing the right thing getting into the trial. If it were me, I would try to push against the fatigue a little each day - try to get up and get out and do something, even if it's not much. I believe that is the best thing for CLL fatigue when anemia is not involved. Excessive cytokine release may be part of a systemic inflammatory process. Movement and activity can help reduce that process.
I will try. It has been worsening for ten years - worst in about last 6 months
I really hope it gets better. Maybe it will after you start the trial.
I don’t want to do the trial with otherwise good numbers if that is not the right thing to do.
Have you had your B12 checked. I used to think that people were exaggerating when they posted about how much supplementing made a difference. Then I started absolute hitting the wall around 5:00 PM. When my B12 was checked it had crashed. Getting my B12 back in range made a huge difference.
Which trial are you considering moxie? I would try getting out, but would hire help if you can. It might save your relationship with your daughter. Those not dealing with fatigue don’t understand it.
LovecutesCLL could you post the name of the app, please.
ECOG trial = ob + Ibrutinib +\- Ventoclax I take B12 - no diff. I have hypothyroidism but numbers OK.
I agree with Kim that pushing through depends on the cause. I, personally have found that on the days I am able to push through, I do. On those that I cannot push through, i can’t. Simplistic, I know but....on my good fatigue days, I can push through and get the bare minimum done, with a short therapeutic walk. On my worse days, self care is all I can manage. I also have a craft that I can do sitting at my desk, that gives me “purpose” since I have retired. But on bad days, I can’t even do that. I sometimes play a game with myself, that I will imagine if I had $1000 to be used at my favorite clothing store or hobby shop. Would I be able to go and shop and spend it? There are some days yes, and some days no. On the yes days, I push through. I just had my 50th high school class reunion two weeks ago. I have lost a considerable amount of weight and most of my clothes are too big, but I was too fatigued to go shopping for a new outfit. I pushed through big time to even go to the reunion, but slept most of the 9 hour round trip in the car and only managed to stay for a couple of hours.
If you have not already done so, check out the website butyoudontlooksick.com and read about the Spoon Theory. You could also show it to your daughter. It might help her to understand what true fatigue is all about.
Good luck!
BeckyL USA
Becky,
Love the $1000 question ! I used to love shopping.
Like a lot of us I have good and bad days. I just wish I knew when they were in advance ? Luckily I am a morning person, so I try to do things then.
Colette 😴
Totally get the dilemna and there is not an obvious simple solution
My physio reminds me that I do have muscles still and if I use them they will get stronger. And for sure some exercise seems to help. But when I was at my worst I literally couldn’t get out of bed. Ended up in hosptal for a month.
I track my steps and heart rate using an Apple Watch. At my worst just sitting up in a chair was enough to send my heart rate thru the roof as if I was jogging or something. And at the worst I made almost no movements a day.
Currently I’m noticing that a really important measure seems to be my average step count per day as measured over a month. Slowly but steadily that is going up. But if I do some more than the average on one day then the next two or three I struggle to do anything.
I also find it hard to focus on my strengthening exercises as it feels like everything I do is using some of my specific energy that I won’t get back that day. So I tend to do the self care and minimal things for the family first and then struggle to do my exercise.
It’s like the disease is pulling us down and literally trying to make us lie down and not get up.
And we can fight it to an extent.
But ultimately treatment is what’s needed.
The only reason I’m able to improve slowly is because I’ve been treated now of that I’m sure. But I’m not sure how much of my old energy I’ll get back.
Totally get it. If I can’t get rid of fatigue and work on getting some strength back - there is no point in treatment yet, for me. I am so perplexed about what to do.
A simple thing, if you can afford it, is to hire that help. Get that off your to do list. It's a hard thing to learn but what a gift to yourself. Get rid of those annoying things out there and focus on your health!
Virginia
Hey Moxie - this is an intriguing statement about “no point in treatment yet”. I’m not sure I understand you but extreme fatigue is GREAT reason to start treatment. Be gentle with yourself but heed what others have said about using those muscles everyday if you can. It’s about pacing and setting priorities. If you do too much in one day it may take a few days to recover. Sometimes this is worth it. Often it is not.
Deconditioned muscles do not use energy efficiently. Joints need movement to be nourished and move more easily. At the very least bend your arms, raise and lower them, straighten your legs, flex and extend your feet and hands. If necessary do this once an hour to start then gradually increase to sets of ten a few times a day. In time you can add things like rising up on tiptoe and down. Be gentle and creative. It’ll take some time and your muscles may complain if they haven’t moved much in a long time but remember
There is a difference between hurt and harm. Just don’t force anything.
Extreme debilitating fatigue was one of my symptoms prior to starting treatment. And like you, my numbers weren't that bad but I am unmutated, Stage II, enlarged nodes & spleen, etc. My fatigue was like narcolepsy - would strike without warning and I'd practically pass out for about 40 minutes. Happened at work, in meetings, in restaurants, at the gym, and if driving, I'd struggle to pull over to the side of the road. I once had to be carried off a plane because I couldn't get out of my seat to deplane. If I tried to "push through" with coffee, it would just make me nauseous. Once starting treatment with ibrutinib and obinutuzumab, that kind of fatigue stopped immediately. I now get general fatigue but it is very manageable with coffee, exercise, and naps at convenient times. And I sleep like the dead for about 7 hours every night. (I wear a Fitbit to track my sleep.)
How old is ur daughter?
22
Gosh she should know better. She is acting out of fear. Can u explain to her fatigue is like someone laying on you double your weight.
24/7. Rest does not help like when you're tired. Does she depend on u doing something for her that you can't now? Hopefully she doesn't live with you. Maybe she should go with you to ur next doctor appt.... doctor can explain to her.💕
Yes, she lives with me (for us to save $). and she really drags me down. If you live alone, you know that if something needs done you either have to do it or hire someone - no expectations. If you live with an adult (spouse or child) you ‘hope’ they might care and help you. Those unrealized expectations day after day are heartbreaking. She blames me for the death of her sister 3 years ago because my health was not good and I should have created a better home life.
I have tried to explain to her about the fatigue and sent her articles and posts. They do not help.
I do not want her at my appointments any more. She has been once.
Thank you for your concern and suggestions. It is complicated.
I have my BMB next Tuesday and I am sure my clinical trial will start soon after that.
I am looking forward to feeling better and getting my life in order.
I have tried "pushing through" and sometimes that helps. If my goal is a 30 minute brisk walk, but all I can do is a 10 minute slow walk, then so be it. At least I walked. I have also tried just succumbing to the fatigue and collapsing on the sofa, and sometimes that helps too. Just goes both ways.
I agree. I usually just stay in bed unless I have an appointment. I could not do a ten minute walk at present, but hopefully soon.
I'm including a post about CLL Related Fatigue, in case it is helpful: cllsociety.org/2018/09/cll-...
This topic is also being discussed at an upcoming webinar, please see this link for more information: cllsociety.org/psychology-d...
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