Has anyone any thoughts. on carrying on exercising, whist going through bad fatigue. I have a daily morning routine which I have been doing since I was diagnosed in 2018.
I do not feel like doing it at the moment. So far, I have pushed myself through it. I suppose I could radically reduce the level, until I feel more energetic, or stop altogether.
Regards Ron.
Maybe reduce the amount? I would keep up some kind of exercise if you possibly can, to stop completely risks losing too much muscle tone which can be disabling and lead to falls. How about taking some short walks? Keep moving as much as you can even if only for a few minutes at a time.
Any recent bloodwork? And a recent O2 level check?
I would look for markers (separate from the cancer cells) that might be exhausting you and fix them. If it is the cancer, I'd mark down every day you feel this way, and do as the previous poster said - try to do as much as you can, and then stop. And try a 2nd time later in the day to finish what you can.
If you don't have any obvious signs (like low red blood cells, low B12, etc) in your bloodwork/O2 that would explain why you are getting so tired, and it's "just the CLL", it could be a sign that treatment will be coming in the mid-to-near future.
Edit to Add: And now I see your other post about it being time for you to start treatment, and it getting delayed...so, yeah, it's probably the cancer, and for the short term, I'd push through as much as you can, and rest as much as you can...
Thank you so much for the info, it was really helpful, has reassured somewhat. The sooner I get the needle biopsy done, and start a treatment, the better.
Perhaps the delay in treatment, has not helped.
All the best. Ron
Do as much as you can. I’ve had those days and yet some days I feel strong and continue normally. Working out is what we need heart lungs etc. I am not on any meds and will hold off until my dr is absolutely sure. Clean life is what we all need
I find when my CLL is really active, I get exhausted much easier. If your hemoglobin and other red cell parameters are OK, if you feel like "pushing it" it's probably safe to do so. As long as you aren't doing something where exhaustion/inattention could cause an injury. Many of us actually fell a bit better when we can "make" ourselves go for a brisk walk, or jump on an exercise bike or treadmill. But that's not a 100% guarantee.
That being said, when I first was sick shortly before treatment, I didn't do much of anything for a year or so. Quite a change from me being super athletic, Type A mindset, always doing something.
Make sure you are hydrating adequately and eating well, your cancer is active so *it* is pulling energy sources that other tissues normally would.
I wonder if some of the exhaustion is mental. I remember how I felt when awaiting results & trying to make treatment decisions, it is exhausting. I had one treatment pushed off for mmm 3-4 weeks, and I felt significantly awful & anxious during that time, it's very hard!
Pamper yourself the next few weeks. Don't 100% stay in bed, get up and move around. But if you feel like only doing half intensity, then do half intensity. If you want to skip a day or so, skip. If you want to do a movie marathon, so be it. If you had a pneumonia, you probably would not feel guilty if you didn't want to work out much. Recovering from/dealing with emotional & mental stress is just as valid.
Thank's, SofiaDeo, did you lose weight during this phase. I have lost 8lbs in 6 weeks, and cannot put it back on.
In the last few day's I have lost my appetite, and have to force food down me.
Bad night sweats are draining as well, and don't help.
I'm seeing my Haematologist soon, and hopefully, things may get better. Regards Ron
Rather than try to eat "meals" anymore, I'd suggest eating a little bit, almost every 90-120 minutes (example - split a meal into piece parts and do one at a time). I'd also invest in some bone broth, miso soup, and ensure, and use those depending how much or little protein and actual food you can get down.
I haven't always lost weight when the disease was active. Once when my spleen was getting huge, I lost weight, because eating then made me nauseous, and consequently I ate less. About all I could stand was my breakfast shake, and it took a long time, hours really, to finish it. And I didn't try to exercise much beyond doing chores, walking my dog; heavy exercise when one isn't eating enough isn't helpful.
When I was very weary prior to treatment, I found that if I pushed myself physically, rather than enjoy the endorphins for two days afterwards, I enjoyed them for 20 minutes, and then felt quite fatigued for a couple of days afterwards.
I reduced how many times I really pushed myself to once every two weeks and focused on getting out of the house for walks or hikes. I felt it was still important to move.
My strenuous activity was a 12 mile bike ride. Reduced effort was a 2 mile hike at a leisurely pace.
My CLL specialist said there was no harm in pushing myself but told me not to crash.😂
Thanks CycleWonder, your words are inspiring, and I will carry on doing something regularly. Regards Ron
Keep in mind that exercise can help lessen the fatigue. I had been getting fatigue everyday, likely caused from meningo-encephalitis. But, I've kept plugging along even when my legs felt like they weighed 100 pounds. The fatigue is much less now. I go many days without any at all.
Don't do so much that it causes pain, but just know in the long run that there are long term benefits from getting exercise everyday.
Thanks for the information, I will do my best to keep on doing something regularly. Regards Ron
When I was feeling that way, my husband would tell me. “Old Chinese proverb. Don’t fear slow, fear stop!” I would just do what I could, but make sure I did something. It worked for me.
I do like the Quote it makes sense to me, and I will try and follow the sentiment. All the best Ron,
Oh yes that reminds me, I had a very similar quote that I said to myself on my walks too, and I even made it into a little frame to hang on my door
Any movement is better than none. I'd take it easy and do multiple short sessions during the day. A few air squats, wall push-ups, whatever you feel you can do.
Thanks Leo Pa good advice. Regards Son.
The fatigue changed my exercise routine. I had to get into a place of acceptance that this might be my new normal. Once I accepted my situation I then asked myself what can I do. I walk daily, even if tired, and I’m working on getting back to adding more strength training. I encourage you not to give in to the situation. Do what you can do and then slowly add more.
Will do Katie, thanks for your advice. I hope you too, continue to progress, notwithstanding the 'Dreaded Fatigue' 😀Ron
When the fatigue hit me badly, I went from running and aerobic exercises to walking , yoga or swimming instead. Whilst in treatment I can only manage walking. One foot in front of the other one day at a time and slowly but surely you feel yourself building again. Rest when you need to too.
Don't forget to check Vitamin D and other usual parameters when getting CLL bloodwork. I know I sound like a broken record (a comment from the past haha) but there are other things that can cause fatigue. Once I ruled out anemia (I was anemic) and added vitamin D (I was deficient) and made some adjustments to my vitamin regimen, I had a lot of help from doing gentle yoga and relaxation exercises when I was particularly fatigued. Plus a change in your exercise routine can help, choosing a different exercise or doing it at a different time. Take care, and best of luck!
I never stopped working out even after my white blood cells count was over 250 and my Reds were near 0. Started treatment and my numbers really turned around and am glad I didn't have to start from scratch at the gym. Exercise and meditation are two things that you can put in the bank against CLL. Keep it up, you can always shorten the time a little to give yourself some extra breathing room.
Cheers,
barger1951
Thanks so much. Ron.
That is the million dollar question.
My experience is that I have always tried to push through any illness as my parents, coaches in sports and medical training supervisors, then associates in my profession never let any one off the hook for doing what had to be done.
However, with CLL there have been periods where in I have finally been able to give myself permission to rest.
I've tried to do all the same outdoor activities as exercising in nature is so therapeutic to my mind, body and soul. Further, physical fitness is good for the body and healing. But I have had to cut back on how hard I push myself.
Daily it is a mental challenge to force myself to get out and do things because of feeling tired, nervous etc. even though I find that every time I do get out I feel so much better.
So I would say give yourself permission to back off a bit on what you do, take naps when needed and strive to stay as active as you can in ways that are safe, enjoyable and therapeutic to you.
Also, if you start feeling worse physically for more than a few days, get in and get checked out with your doc to make sure there is not something treatable that can make you feel better.
God bless and good luck
Skipro
Hey, Ron, tho can't give advice, I know I classify my days as having "gym energy" or not. More "nots" than "haves" but when I don't, I take it easy (which is what my body is telling me to do, I feel). With gym energy, well, of course, I go to the gym and do high intensity aerobics. Lately, I'm pleased to say, I've had many gym energy days. Hope it keeps up. Good luck.
Hi Rob, I have been a bodybuilder for the last 35 yrs it's one of my biggest issues not being able to train as hard or as regular as I could pre CLL diagnosis. What I've learnt is that you have to pick your days when you've had a good night's rest, are hydrated and carbed up. I still find some sessions I just have to stop as there is zero point going through the motions in my opinion. I do take a rather potent liquid pre workout prior which definitely helps and of course caffeine is my gym drink of choice (old school). Recently I've started taking shilijit and Tomkat Ali and I do feel for me they give me some stability.
I wish you well in your journey. I think exercise and increased muscle coming into your 50/60's is a massive help to your health including the mental health benefits.
Gary
Fatigue
Fatigue
Acalabrutnib & Fatigue
Fatigue on Venetoclax
The power of exercise
